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You’re invited! Join us for Boston Children’s Hospital & Beautifully Made Community’s 5th Annual Limb Difference Day 🤟

This special day brings
families with limb differences together for connection, encouragement, resource discovery and celebration. Our goal is that every child and parent leaves feeling seen, supported, and never alone on this journey.

This year’s event will include:
✨ Family-friendly games and activities
🤝 Resource tables hosted by incredible partner organizations
🎤 Inspiring speakers
💬 Small group discussions to create space for sharing experiences, asking questions and building deeper connections
🍽️ A catered lunch for families to relax and enjoy time together

Whether this is your first time attending or you’ve been part of our community for years, we would love to welcome you.

☀️ Message us for details or to RSVP
💌 Interested in hosting a resource table? We’d love to connect with you!

***This event is not exclusive to upper limb differences- we are partnered with the upper orthopedic team but everyone is welcome. Congenital, acquired, upper and lower ✌️
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#limbdifferenceawareness #beautifullymade #beautifullymadecommunity #boston #bostonchildrenshospital

You’re invited! Join us for Boston Children’s Hospital & Beautifully Made Community’s 5th Annual Limb Difference Day 🤟

This special day brings
families with limb differences together for connection, encouragement, resource discovery and celebration. Our goal is that every child and parent leaves feeling seen, supported, and never alone on this journey.

This year’s event will include:
✨ Family-friendly games and activities
🤝 Resource tables hosted by incredible partner organizations
🎤 Inspiring speakers
💬 Small group discussions to create space for sharing experiences, asking questions and building deeper connections
🍽️ A catered lunch for families to relax and enjoy time together

Whether this is your first time attending or you’ve been part of our community for years, we would love to welcome you.

☀️ Message us for details or to RSVP
💌 Interested in hosting a resource table? We’d love to connect with you!

***This event is not exclusive to upper limb differences- we are partnered with the upper orthopedic team but everyone is welcome. Congenital, acquired, upper and lower ✌️
.
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#limbdifferenceawareness #beautifullymade #beautifullymadecommunity #boston #bostonchildrenshospital

Spreading love, one rock at a time! 🎨💕✨
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📸: Boston Children’s Hospital & Beautifully Made Community Event 2025
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#positivevibes #inclusion #beautiful #beautifullymade #beautifullymadecommunity #love #limbdifferenceawareness

Spreading love, one rock at a time! 🎨💕✨
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📸: Boston Children’s Hospital & Beautifully Made Community Event 2025
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#positivevibes #inclusion #beautiful #beautifullymade #beautifullymadecommunity #love #limbdifferenceawareness

Discovering that powerful sense of relatability and community really changes everything- it’s pure gold. Challenges are understood, successes are celebrated and incredible connections are forged. You’re not alone on this journey. There’s many resources, organizations, and advocates who will share support, guidance & open up meaningful experiences!

Check out our website to view our recommendations or to simply learn more about limb differences if you’re new to discovery.

https://www.beautifullymadecommunity.org

Beautifullymadecommunity@gmail.com
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📸: Boston Children’s Hospital & Beautifully Made Community 2025 Limb Difference Event. Made possible by @thecouldregistry
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#beautifullymade #limbdifference #limbdifferenceawareness #connection #positivity #inclusion

Discovering that powerful sense of relatability and community really changes everything- it’s pure gold. Challenges are understood, successes are celebrated and incredible connections are forged. You’re not alone on this journey. There’s many resources, organizations, and advocates who will share support, guidance & open up meaningful experiences!

Check out our website to view our recommendations or to simply learn more about limb differences if you’re new to discovery.

https://www.beautifullymadecommunity.org

Beautifullymadecommunity@gmail.com
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📸: Boston Children’s Hospital & Beautifully Made Community 2025 Limb Difference Event. Made possible by @thecouldregistry
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#beautifullymade #limbdifference #limbdifferenceawareness #connection #positivity #inclusion

Nearing our 4th annual Limb Difference Event with the Hand and Orthopedic Upper Extremity Program at @bostonchildrens -June 14th!!
Each year has been so special. We’re thankful to all of the families, donors, volunteers, organizations, physicians and the @thecouldregistry for making this all possible.
Getting excited to see everyone next month!!! :)

✨it’s not too late to RSVP!! 🥳

✨if you’d like your resources shared please DM me ASAP!!

Special thanks to: @campnolimits @grip_uf @nubabilityathletics @ontheotherhandtherapy @eazyhold @acorn_cottage_press @adventuresofroxyroo @mimitens @babyzips.ca
For attending/sharing resources at our past events 🙏
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#bostonchildrenshospital #boston #orthopedic #beautifullymade #limbdifference #limbdifferenceawareness #beautifullymadecommunity #resources #community #support #inclusion #inclusiveeducation #educate #diversity #beautiful #collaboration

Nearing our 4th annual Limb Difference Event with the Hand and Orthopedic Upper Extremity Program at @bostonchildrens -June 14th!!
Each year has been so special. We’re thankful to all of the families, donors, volunteers, organizations, physicians and the @thecouldregistry for making this all possible.
Getting excited to see everyone next month!!! :)

✨it’s not too late to RSVP!! 🥳

✨if you’d like your resources shared please DM me ASAP!!

Special thanks to: @campnolimits @grip_uf @nubabilityathletics @ontheotherhandtherapy @eazyhold @acorn_cottage_press @adventuresofroxyroo @mimitens @babyzips.ca
For attending/sharing resources at our past events 🙏
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#bostonchildrenshospital #boston #orthopedic #beautifullymade #limbdifference #limbdifferenceawareness #beautifullymadecommunity #resources #community #support #inclusion #inclusiveeducation #educate #diversity #beautiful #collaboration

✨You’re invited!! to Boston Children’s Hospital & Beautifully Made Community’s 4th annual Limb Difference Day Event.

☀️Please message if you’re interested in attending or want to set up a table for your organization/ or sending resources to share!!! 💗
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#bostonchildrenshospital #limbdifference #limbdifferenceawareness #educate #beautifullymade #resources #event

✨You’re invited!! to Boston Children’s Hospital & Beautifully Made Community’s 4th annual Limb Difference Day Event.

☀️Please message if you’re interested in attending or want to set up a table for your organization/ or sending resources to share!!! 💗
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#bostonchildrenshospital #limbdifference #limbdifferenceawareness #educate #beautifullymade #resources #event

✨Limb Difference Spotlight✨
Apert Syndrome

“Apert syndrome also known as acrocephalosyndactyly, is a genetic difference that causes fusion of the skull, hands, and feet bones. Apert syndrome occurs in one out of every 65,000 to 88,000 births.”

Children with Apert syndrome typically experience craniosynostosis and midface hypoplasia. The characteristic feature that distinguishes Apert syndrome from other types of syndromic craniosynostosis is the presence of syndactyly— a condition in which their fingers are webbed or conjoined. There are three main types of syndactyly in Apert syndrome: Type I (“spade hand”): the index, middle, and ring fingers are fused, and the thumb is free. These patients typically have a “flat” palm.
Type II (“mitten hand”): the three middle fingers and the thumb are fused, and the palm curves inward or is concave. Type III (“rosebud hand”): All fingers and the thumb are fused.
Complex syndactyly benefits from specialty surgical care to release and result in the greatest degree of function that can be achieved.”

✨RESOURCES✨

▫️Facebook-
🔎Apert Moms of the USA
🔎 Apert Syndrome
🔎Apert Syndrome and Syndromic Craniosynostosis Awareness
🔎 Apert Syndrome Information and Research Group

▫️Instagram-
@Danibeachdiaries
@facescraniofacialassociation
@myfaceorg
@bostonchildrens
@Shrinershospitals

▫️Websites-
▪️ https://www.childrenshospital.org/conditions/apert-syndrome
▪️ https://www.chop.edu/conditions-diseases/apert-syndrome
▪️ https://my.clevelandclinic.org/health/diseases/22077-apert-syndrome
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If you have any other resources pertaining to Apert Syndrome please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #representationmatters #limbdifference #limbdifferenceawareness #luckyfin #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate
#strong #inclusiveeducation #apertsyndrome

✨Limb Difference Spotlight✨
Apert Syndrome

“Apert syndrome also known as acrocephalosyndactyly, is a genetic difference that causes fusion of the skull, hands, and feet bones. Apert syndrome occurs in one out of every 65,000 to 88,000 births.”

Children with Apert syndrome typically experience craniosynostosis and midface hypoplasia. The characteristic feature that distinguishes Apert syndrome from other types of syndromic craniosynostosis is the presence of syndactyly— a condition in which their fingers are webbed or conjoined. There are three main types of syndactyly in Apert syndrome: Type I (“spade hand”): the index, middle, and ring fingers are fused, and the thumb is free. These patients typically have a “flat” palm.
Type II (“mitten hand”): the three middle fingers and the thumb are fused, and the palm curves inward or is concave. Type III (“rosebud hand”): All fingers and the thumb are fused.
Complex syndactyly benefits from specialty surgical care to release and result in the greatest degree of function that can be achieved.”

✨RESOURCES✨

▫️Facebook-
🔎Apert Moms of the USA
🔎 Apert Syndrome
🔎Apert Syndrome and Syndromic Craniosynostosis Awareness
🔎 Apert Syndrome Information and Research Group

▫️Instagram-
@Danibeachdiaries
@facescraniofacialassociation
@myfaceorg
@bostonchildrens
@Shrinershospitals

▫️Websites-
▪️ https://www.childrenshospital.org/conditions/apert-syndrome
▪️ https://www.chop.edu/conditions-diseases/apert-syndrome
▪️ https://my.clevelandclinic.org/health/diseases/22077-apert-syndrome
————————————————————————————
If you have any other resources pertaining to Apert Syndrome please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #representationmatters #limbdifference #limbdifferenceawareness #luckyfin #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate
#strong #inclusiveeducation #apertsyndrome

✨Limb Difference Spotlight✨
Syndactyly

“Syndactyly is the medical term for webbed or conjoined fingers or toes. It’s one of the most common congenital differences that affects hands and feet. Syndactyly occurs in about one in every 2,000-3,000 children born each year with up to 50% of cases being bilateral.
Syndactyly is described as simple or complex. Simple syndactyly means that the fingers are joined by skin and soft tissue only. Complex syndactyly means that the underlying bones are also joined together. Complicated syndactyly means that there are extra bones, and the tendons and ligaments have developed abnormally. Syndactyly can be treated with surgery to separate the joined fingers for functional purposes. Typically, children have this operation between 1 and 2 years old.”

✨RESOURCES✨

▫️Facebook-
🔎 Syndactyly, Polydactyly Ectrodactyly, Oligodactyly
and Symbrachdactyly UK
🔎 Syndactyly Family Support
🔎 Syndactyly
🔎 Syndactyly/Symbrachydactyly

▫️Instagram-
@lucky_fin_project
@campnolimits
@handstoloveofficial
@the_hhp

▫️Websites-
▪️ https://www.chop.edu/conditions-diseases/syndactyly
▪️ https://www.childrenshospital.org/conditions/syndactyly#:~:text=What%20is%20syndactyly%3F,toes%2C%20but%20not%20as%20often.
▪️ https://my.clevelandclinic.org/health/diseases/23521-syndactyly-webbed-digits
▪️https://www.ncbi.nlm.nih.gov/books/NBK557704/
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If you have any other resources pertaining to Syndactyly please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #representationmatters #limbdifference #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate
#strong #inclusiveeducation #Syndactyly

✨Limb Difference Spotlight✨
Syndactyly

“Syndactyly is the medical term for webbed or conjoined fingers or toes. It’s one of the most common congenital differences that affects hands and feet. Syndactyly occurs in about one in every 2,000-3,000 children born each year with up to 50% of cases being bilateral.
Syndactyly is described as simple or complex. Simple syndactyly means that the fingers are joined by skin and soft tissue only. Complex syndactyly means that the underlying bones are also joined together. Complicated syndactyly means that there are extra bones, and the tendons and ligaments have developed abnormally. Syndactyly can be treated with surgery to separate the joined fingers for functional purposes. Typically, children have this operation between 1 and 2 years old.”

✨RESOURCES✨

▫️Facebook-
🔎 Syndactyly, Polydactyly Ectrodactyly, Oligodactyly
and Symbrachdactyly UK
🔎 Syndactyly Family Support
🔎 Syndactyly
🔎 Syndactyly/Symbrachydactyly

▫️Instagram-
@lucky_fin_project
@campnolimits
@handstoloveofficial
@the_hhp

▫️Websites-
▪️ https://www.chop.edu/conditions-diseases/syndactyly
▪️ https://www.childrenshospital.org/conditions/syndactyly#:~:text=What%20is%20syndactyly%3F,toes%2C%20but%20not%20as%20often.
▪️ https://my.clevelandclinic.org/health/diseases/23521-syndactyly-webbed-digits
▪️https://www.ncbi.nlm.nih.gov/books/NBK557704/
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If you have any other resources pertaining to Syndactyly please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #representationmatters #limbdifference #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate
#strong #inclusiveeducation #Syndactyly

✨Limb Difference Spotlight✨
Femoral Anteversion

“Femoral anteversion is a condition where the femur (thigh bone) twists inward. The inward twisting of the femur causes the knees and feet to turn inward. Femoral anteversion occurs in approximately 10% of children, and the cause is unclear. Femoral anteversion often resolves on its own as the child grows and does not necessitate treatment. In more severe cases that do not self-correct by age 8 or 9 years old, treatment may involve bracing and special shoes aimed at correcting the foot position, or surgery to rotate the femur to a better position.”

✨RESOURCES✨

▫️Instagram-
@alignedk8

▫️Websites-
▪️ https://www.childrenshospital.org/conditions/femoral-anteversion#:~:text=Femoral%20anteversion%20is%20an%20inward,is%20also%20called%20in%2Dtoeing.
▪️ https://www.chop.edu/conditions-diseases/femoral-anteversion
▪️ https://medical-dictionary.thefreedictionary.com/femoral+anteversion
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If you have any other resources pertaining to femoral anteversion please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #representationmatters #limbdifference #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate
#strong #inclusiveeducation #FemoralAnteversion

✨Limb Difference Spotlight✨
Femoral Anteversion

“Femoral anteversion is a condition where the femur (thigh bone) twists inward. The inward twisting of the femur causes the knees and feet to turn inward. Femoral anteversion occurs in approximately 10% of children, and the cause is unclear. Femoral anteversion often resolves on its own as the child grows and does not necessitate treatment. In more severe cases that do not self-correct by age 8 or 9 years old, treatment may involve bracing and special shoes aimed at correcting the foot position, or surgery to rotate the femur to a better position.”

✨RESOURCES✨

▫️Instagram-
@alignedk8

▫️Websites-
▪️ https://www.childrenshospital.org/conditions/femoral-anteversion#:~:text=Femoral%20anteversion%20is%20an%20inward,is%20also%20called%20in%2Dtoeing.
▪️ https://www.chop.edu/conditions-diseases/femoral-anteversion
▪️ https://medical-dictionary.thefreedictionary.com/femoral+anteversion
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If you have any other resources pertaining to femoral anteversion please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #representationmatters #limbdifference #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate
#strong #inclusiveeducation #FemoralAnteversion

✨Limb Difference Spotlight✨
Limb loss due to Sepsis

“Sepsis is a condition that occurs when the body’s response to an infection damages its own tissues and can lead to extensive inflammation, blood clotting, and organ failure. As sepsis worsens, sometimes nutrients cannot get to the tissues in the fingers, hands, arms, toes, feet, and legs. The body’s tissues begin to die and can cause gangrene. The dead tissue must be removed to prevent further infection. If the damage is extensive, amputation may be needed. Out of the approximate 185,000 amputations per year, around 13,870 are caused by sepsis.

On average, about 38 amputations a day are due to sepsis. Amputation is the loss or removal of a body part. The decision to amputate is based on making sure enough tissue is removed to ensure that all the damaged tissue is gone, and to preserve the patient’s independence and mobility as much as possible. Ideally, patients who have had an amputation will begin physiotherapy as soon as possible. Physiotherapy may include stretching and increasing muscle strength. Occupational therapists play an important role in helping amputees learn how to use special tools or adapt their living environment as needed. ”

✨RESOURCES✨

▫️Facebook-
🔎 “Sepsis Warriors”
🔎 “Sepsis Awareness, Septic Shock, survivors”
🔎”Post Sepsis Syndrome and LIVING Life After Surviving Sepsis”
🔎”Sepsis Survivors Society”

▫️Instagram-
@bellatucker_
@beaudensblessings
@limbkindfoundation
@amputeecoalition
@astepaheadprosthetics
@givability.us
@rompglobal
@limb_it_less_
@limbitlesspossibilities
@koalaacommunity
@advancedprostheticsolutions

▫️Websites-
▪️https://www.sepsis.org/sepsisand/amputations/
▪️https://www.mayoclinic.org/diseases-conditions/sepsis/symptoms-causes/syc-20351214
▪️https://my.clevelandclinic.org/health/diseases/12361-sepsis
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #representationmatters #limbdifference #limbdifferenceawareness #disabilityawareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate #amputee
#strong #inclusiveeducation #Sepsis #sepsissurvivor

✨Limb Difference Spotlight✨
Limb loss due to Sepsis

“Sepsis is a condition that occurs when the body’s response to an infection damages its own tissues and can lead to extensive inflammation, blood clotting, and organ failure. As sepsis worsens, sometimes nutrients cannot get to the tissues in the fingers, hands, arms, toes, feet, and legs. The body’s tissues begin to die and can cause gangrene. The dead tissue must be removed to prevent further infection. If the damage is extensive, amputation may be needed. Out of the approximate 185,000 amputations per year, around 13,870 are caused by sepsis.

On average, about 38 amputations a day are due to sepsis. Amputation is the loss or removal of a body part. The decision to amputate is based on making sure enough tissue is removed to ensure that all the damaged tissue is gone, and to preserve the patient’s independence and mobility as much as possible. Ideally, patients who have had an amputation will begin physiotherapy as soon as possible. Physiotherapy may include stretching and increasing muscle strength. Occupational therapists play an important role in helping amputees learn how to use special tools or adapt their living environment as needed. ”

✨RESOURCES✨

▫️Facebook-
🔎 “Sepsis Warriors”
🔎 “Sepsis Awareness, Septic Shock, survivors”
🔎”Post Sepsis Syndrome and LIVING Life After Surviving Sepsis”
🔎”Sepsis Survivors Society”

▫️Instagram-
@bellatucker_
@beaudensblessings
@limbkindfoundation
@amputeecoalition
@astepaheadprosthetics
@givability.us
@rompglobal
@limb_it_less_
@limbitlesspossibilities
@koalaacommunity
@advancedprostheticsolutions

▫️Websites-
▪️https://www.sepsis.org/sepsisand/amputations/
▪️https://www.mayoclinic.org/diseases-conditions/sepsis/symptoms-causes/syc-20351214
▪️https://my.clevelandclinic.org/health/diseases/12361-sepsis
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #representationmatters #limbdifference #limbdifferenceawareness #disabilityawareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate #amputee
#strong #inclusiveeducation #Sepsis #sepsissurvivor

✨Limb Difference Spotlight✨
Posteromedial Tibial Bowing

\ pos· tero· me· di· al | \ päs-tə-rō-ˈmēd-ē əl :located on or near the dorsal midline of the body or a body part.
tib·i·al | \ ˈtib-ē-əl : of, relating to, or located near a tibia.

“Posteromedial Tibial Bowing is a congenital condition, impacting around 1 in 40,000, in which there is both posterior and medial bowing of the tibia and fibula. The foot assumes a calcaneovalgus position and is typically in extreme dorsiflexion. The foot at birth will occasionally be abutting the concave tibia and a skin dimple is often present over the apex of the bow. The bowing may partially correct on its own within the first 4 years of life. Although the tibia’s growth will be inhibited, treatment is always individualized to accommodate predicted height and the difference in limb lengths.”

✨RESOURCES✨

▫️Facebook-

🔎 “Posteromedial Tibial Bowing Support Group”

▫️Instagram-

@joeysjourney_pmtb
@kristinazangrilli
@sammiiefill
@paleyinstitute
@theborntorunfoundation
@head2toecharity

▫️Websites-

▪️ https://posna.org/Physician-Education/Study-Guide/Posteromedial-Bowing-of-the-Tibia
▪️ https://www.limblength.org/conditions/posteromedial-tibial-bowing-pmtb/
▪️ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5902754/
▪️ https://paleyinstitute.org/blog/conditions/posteromedial-bowing-of-the-tibia/#/
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If you have any other resources pertaining to Posteromedial Tibial Bowing please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #luckyfinsrock #representationmatters #limbdifferenceawareness #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate
#strong #inclusiveeducation #posteromedialtibialbowing #lowerlimbdifference #limbdifferencespotlight

✨Limb Difference Spotlight✨
Posteromedial Tibial Bowing

\ pos· tero· me· di· al | \ päs-tə-rō-ˈmēd-ē əl :located on or near the dorsal midline of the body or a body part.
tib·i·al | \ ˈtib-ē-əl : of, relating to, or located near a tibia.

“Posteromedial Tibial Bowing is a congenital condition, impacting around 1 in 40,000, in which there is both posterior and medial bowing of the tibia and fibula. The foot assumes a calcaneovalgus position and is typically in extreme dorsiflexion. The foot at birth will occasionally be abutting the concave tibia and a skin dimple is often present over the apex of the bow. The bowing may partially correct on its own within the first 4 years of life. Although the tibia’s growth will be inhibited, treatment is always individualized to accommodate predicted height and the difference in limb lengths.”

✨RESOURCES✨

▫️Facebook-

🔎 “Posteromedial Tibial Bowing Support Group”

▫️Instagram-

@joeysjourney_pmtb
@kristinazangrilli
@sammiiefill
@paleyinstitute
@theborntorunfoundation
@head2toecharity

▫️Websites-

▪️ https://posna.org/Physician-Education/Study-Guide/Posteromedial-Bowing-of-the-Tibia
▪️ https://www.limblength.org/conditions/posteromedial-tibial-bowing-pmtb/
▪️ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5902754/
▪️ https://paleyinstitute.org/blog/conditions/posteromedial-bowing-of-the-tibia/#/
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If you have any other resources pertaining to Posteromedial Tibial Bowing please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #luckyfinsrock #representationmatters #limbdifferenceawareness #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate
#strong #inclusiveeducation #posteromedialtibialbowing #lowerlimbdifference #limbdifferencespotlight

✨Limb Difference Research Spotlight✨
“Functional Impact of Congenital Hand Differences: Early Results From the Congenital Upper Limb Differences (CoULD) Registry”

Purpose - Evaluate the functional, emotional, and social impact of congenital upper limb differences prior to treatment.

Significance - Understanding these areas beyond physical function provides more complete perspective on patient’s function, quality of life and well-being related to their condition.

Methods - Between June 2014 to March 2016, 2 pediatric hospitals enrolled 586 patients in the CoULD Registry. Of those, 301 patients were included in the study. Two patient-reported outcome surveys were given (Pediatric Outcomes Data Collection Instrument - PODCI and the Patient-Reported Outcomes Measurement Information System - PROMIS).

Results - Ultimately, children and adolescents with upper limb differences showed more positive emotional states and peer relationships compared to their peers, in addition to good mobility and overall function, despite reduced upper extremity function.

✨RESOURCES✨

▫️Authors-
📝Donald S. Bae, MD; Maria F. Canizares, MD; Patricia E. Miller, MS; Peter M. Waters, MD; Charles A. Goldfarb, MD

▫️Websites-
▪️ https://www.jhandsurg.org/article/S0363-5023(16)31066-8/fulltext
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #representationmatters #limbdifference #limbdifferenceawareness #luckyfin #bostonchildrens #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful #educate
#strong #inclusiveeducation #research

✨Limb Difference Research Spotlight✨
“Functional Impact of Congenital Hand Differences: Early Results From the Congenital Upper Limb Differences (CoULD) Registry”

Purpose - Evaluate the functional, emotional, and social impact of congenital upper limb differences prior to treatment.

Significance - Understanding these areas beyond physical function provides more complete perspective on patient’s function, quality of life and well-being related to their condition.

Methods - Between June 2014 to March 2016, 2 pediatric hospitals enrolled 586 patients in the CoULD Registry. Of those, 301 patients were included in the study. Two patient-reported outcome surveys were given (Pediatric Outcomes Data Collection Instrument - PODCI and the Patient-Reported Outcomes Measurement Information System - PROMIS).

Results - Ultimately, children and adolescents with upper limb differences showed more positive emotional states and peer relationships compared to their peers, in addition to good mobility and overall function, despite reduced upper extremity function.

✨RESOURCES✨

▫️Authors-
📝Donald S. Bae, MD; Maria F. Canizares, MD; Patricia E. Miller, MS; Peter M. Waters, MD; Charles A. Goldfarb, MD

▫️Websites-
▪️ https://www.jhandsurg.org/article/S0363-5023(16)31066-8/fulltext
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#strong #inclusiveeducation #research

✨Resource Spotlight✨
ACCESSIBLE TRAVEL TIPS

Planning the trip-

1: Consider planning a trip through an agency specializing in accessible travel.
*Flying Wheels Travel
*Accessible Journeys
*The Society for Accessible Travel & Hospitality

2: Organize all assistive devices and equipment/tools into a separate bag(s) from the luggage because
*medical bags fly free on most airlines.
*Ask to speak to the airline’s complaint resolution officer (CRO) if you are being asked to charge medical baggage.

3: Review guidance on TSA screening
*By law, you are not required to remove orthotics, prosthetics, or assistive devices.

4: Know how to request wheelchair assistance or preboarding.
*Airlines are mandated to offer assistance under the Air Carrier Access Act.
* Call the airline directly when booking ticket and specify all assisted needs for arrival, in air and departure.
*Add wheelchair assistance request to your boarding pass through the “add special assistance” tab.
*Upon arrival, go directly to TSA, ticket agent or check in counter to inform staff that you need assistance.
* By law, an attendant must tote your carry on luggage for you if you can’t.

5: If driving, there are accessible rental car services or ride-sharing apps with accessibility options, like:
*Uber WAV
*Uber Assist
*LYFT WAV

.
.
#accessibletravel #inclusion #travel #beautifullymade #traveltips #limbdifferenceawareness #limbdifference #accessibility

✨Resource Spotlight✨
ACCESSIBLE TRAVEL TIPS

Planning the trip-

1: Consider planning a trip through an agency specializing in accessible travel.
*Flying Wheels Travel
*Accessible Journeys
*The Society for Accessible Travel & Hospitality

2: Organize all assistive devices and equipment/tools into a separate bag(s) from the luggage because
*medical bags fly free on most airlines.
*Ask to speak to the airline’s complaint resolution officer (CRO) if you are being asked to charge medical baggage.

3: Review guidance on TSA screening
*By law, you are not required to remove orthotics, prosthetics, or assistive devices.

4: Know how to request wheelchair assistance or preboarding.
*Airlines are mandated to offer assistance under the Air Carrier Access Act.
* Call the airline directly when booking ticket and specify all assisted needs for arrival, in air and departure.
*Add wheelchair assistance request to your boarding pass through the “add special assistance” tab.
*Upon arrival, go directly to TSA, ticket agent or check in counter to inform staff that you need assistance.
* By law, an attendant must tote your carry on luggage for you if you can’t.

5: If driving, there are accessible rental car services or ride-sharing apps with accessibility options, like:
*Uber WAV
*Uber Assist
*LYFT WAV

.
.
#accessibletravel #inclusion #travel #beautifullymade #traveltips #limbdifferenceawareness #limbdifference #accessibility

✨Limb Difference Spotlight✨
Tibial Torsion
tib·i·al | \ ˈtib-ē-əl : of, relating to, or located near a tibia. \ tor·sion | \ ˈtȯr-shən : the twisting of a bodily organ or part on its own axis.
There are two types of tibial torsion: internal & external. Whether the toes point inward (intoeing) or outward (outtoeing), tibial torsion is a common cause of gait (manner of walking) differences. Other conditions that can cause intoeing include:
• femoral anteversion, the inward twisting of the thigh bone (femur)
• metatarsus adductus, a foot deformity that causes the front half of the foot to turn inward.
Almost all children with internal tibial torsion improve without treatment, usually by the time they turn 4.
Although tibial torsion is a limb difference that you’re born with, it is often unnoticeable until a child starts to walk. For many kids, one leg twists more noticeably than the other.

✨RESOURCES✨

▫️Facebook-
🔎 “Clubfoot support”

▫️Instagram-
▪️ @amandabee1103
▪️ blanc.beaute__

▫️Websites-
▪️ https://www.merriam-webster.com/medical/tibial
▪️ https://www.merriam-webster.com/dictionary/torsion
▪️ https://emedicine.medscape.com/article/1251352-overview
▪️ https://www.chop.edu/conditions-diseases/tibial-torsion
▪️ https://www.childrenshospital.org/conditions/tibial-torsion
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If you have any other resources pertaining to Tibial Torsion please feel free to leave yourself or another page in the comments.
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#kindnessmatters #luckyfinproject #beautifullymade #luckyfinsrock #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful
#strong #inclusiveeducation #tibialtorsion #lowerlimbdifference #limbdifferencespotlight

✨Limb Difference Spotlight✨
Tibial Torsion
tib·i·al | \ ˈtib-ē-əl : of, relating to, or located near a tibia. \ tor·sion | \ ˈtȯr-shən : the twisting of a bodily organ or part on its own axis.
There are two types of tibial torsion: internal & external. Whether the toes point inward (intoeing) or outward (outtoeing), tibial torsion is a common cause of gait (manner of walking) differences. Other conditions that can cause intoeing include:
• femoral anteversion, the inward twisting of the thigh bone (femur)
• metatarsus adductus, a foot deformity that causes the front half of the foot to turn inward.
Almost all children with internal tibial torsion improve without treatment, usually by the time they turn 4.
Although tibial torsion is a limb difference that you’re born with, it is often unnoticeable until a child starts to walk. For many kids, one leg twists more noticeably than the other.

✨RESOURCES✨

▫️Facebook-
🔎 “Clubfoot support”

▫️Instagram-
▪️ @amandabee1103
▪️ blanc.beaute__

▫️Websites-
▪️ https://www.merriam-webster.com/medical/tibial
▪️ https://www.merriam-webster.com/dictionary/torsion
▪️ https://emedicine.medscape.com/article/1251352-overview
▪️ https://www.chop.edu/conditions-diseases/tibial-torsion
▪️ https://www.childrenshospital.org/conditions/tibial-torsion
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If you have any other resources pertaining to Tibial Torsion please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #luckyfinproject #beautifullymade #luckyfinsrock #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful
#strong #inclusiveeducation #tibialtorsion #lowerlimbdifference #limbdifferencespotlight

✨Limb Difference Spotlight✨

Ulnar longitudinal deficiency, previously known as ulnar club hand, is a condition in which the wrist is in a fixed and bent position toward the side of the hand with the little finger. This condition is also sometimes called ulnar dysplasia. It happens when 1 of the long bones of the forearm, the ulna, and other soft tissues of the hand, develop differently in the womb. The fingers and thumb may also be affected. Other muscles and nerves in the hand may be unbalanced or missing.
There can be other correlations within musculoskeletal system, such as scoliosis.
Ulnar longitudinal deficiency affects about 1 in 100,000 babies.
Infants with ulnar longitudinal deficiency can wear a splint and be treated with gentle stretching exercises to help their wrist and elbow move into a normal position and recover some range of motion. Some types of ulnar longitudinal deficiency can also be treated with surgery to improve hand and arm function.

✨RESOURCES✨

▫️Facebook-
🔎 “Congenital Hand and Arm Differences”
🔎 “Lucky Fin Project”

▫️Instagram-
@unlimitedtiaraoluwa
@jaydenkoa_
@freyasluckyarm

▫️Websites-
▪️ https://www.childrenshospital.org/sites/default/files/media_migration/b92321c9-b748-42ec-80fc-59af050f763b.pdf
▪️ https://www.stanfordchildrens.org/en/service/hand-upper-limb-surgery/ulnar-longitudinal-deficiency?
▪️ https://www.connecticutchildrens.org/health-library/en/parents/ulnar-dysplasia/
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If you have any other resources pertaining to Ulnar Longitudinal Deficiency please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #luckyfinsrock #tenfingersareoverrated #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful
#strong #inclusiveeducation #ulnarlongitudinaldeficiency #ulnardysplasia #limbdifferencespotlight

✨Limb Difference Spotlight✨

Ulnar longitudinal deficiency, previously known as ulnar club hand, is a condition in which the wrist is in a fixed and bent position toward the side of the hand with the little finger. This condition is also sometimes called ulnar dysplasia. It happens when 1 of the long bones of the forearm, the ulna, and other soft tissues of the hand, develop differently in the womb. The fingers and thumb may also be affected. Other muscles and nerves in the hand may be unbalanced or missing.
There can be other correlations within musculoskeletal system, such as scoliosis.
Ulnar longitudinal deficiency affects about 1 in 100,000 babies.
Infants with ulnar longitudinal deficiency can wear a splint and be treated with gentle stretching exercises to help their wrist and elbow move into a normal position and recover some range of motion. Some types of ulnar longitudinal deficiency can also be treated with surgery to improve hand and arm function.

✨RESOURCES✨

▫️Facebook-
🔎 “Congenital Hand and Arm Differences”
🔎 “Lucky Fin Project”

▫️Instagram-
@unlimitedtiaraoluwa
@jaydenkoa_
@freyasluckyarm

▫️Websites-
▪️ https://www.childrenshospital.org/sites/default/files/media_migration/b92321c9-b748-42ec-80fc-59af050f763b.pdf
▪️ https://www.stanfordchildrens.org/en/service/hand-upper-limb-surgery/ulnar-longitudinal-deficiency?
▪️ https://www.connecticutchildrens.org/health-library/en/parents/ulnar-dysplasia/
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If you have any other resources pertaining to Ulnar Longitudinal Deficiency please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful
#kindnessmatters #beautifullymade #luckyfinsrock #tenfingersareoverrated #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful
#strong #inclusiveeducation #ulnarlongitudinaldeficiency #ulnardysplasia #limbdifferencespotlight

✨Limb Difference Spotlight✨

Phocomelia is a rare birth difference that can affect the upper and/or lower limbs. The bones of the affected limb are either missing or underdeveloped. The limb is shortened and in some cases, the hand or foot may be attached directly to the trunk. Phocomelia can be responsible for the absence of pelvic and thigh bones. Fingers and toes may also be fused together.
If all four limbs are absent, it’s called tetraphocomelia. “Tetra” means four, “phoco” means seal, and “melos” means limb. This term refers to the ways the hands and feet appear. The hands may be attached to the shoulders, while the feet may be attached to the pelvis.
If desired, upper and lower extremity prosthetics are available for as early as six months of age.

✨RESOURCES✨

▫️Facebook-
🔎 “Lucky Fin Project”
🔎 “https://www.facebook.com/amazinginioluwa”

▫️Instagram-
@amazinginioluwa
@andreas.bradenberger

▫️Websites-
▪️ https://rarediseases.org/gard-rare-disease/phocomelia/
▪️ https://www.stlouischildrens.org/conditions-treatments/phocomelia
▪️ https://www.tgh.org/institutes-and-services/conditions/phocomelia
▪️ https://www.healthline.com/health/phocomelia
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If you have any other resources pertaining to Phocomelia please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful #educate #inclusion #awareness
#kindnessmatters #luckyfinproject #beautifullymade #luckyfinsrock #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful
#strong #inclusiveeducation #limbdifferencespotlight

✨Limb Difference Spotlight✨

Phocomelia is a rare birth difference that can affect the upper and/or lower limbs. The bones of the affected limb are either missing or underdeveloped. The limb is shortened and in some cases, the hand or foot may be attached directly to the trunk. Phocomelia can be responsible for the absence of pelvic and thigh bones. Fingers and toes may also be fused together.
If all four limbs are absent, it’s called tetraphocomelia. “Tetra” means four, “phoco” means seal, and “melos” means limb. This term refers to the ways the hands and feet appear. The hands may be attached to the shoulders, while the feet may be attached to the pelvis.
If desired, upper and lower extremity prosthetics are available for as early as six months of age.

✨RESOURCES✨

▫️Facebook-
🔎 “Lucky Fin Project”
🔎 “https://www.facebook.com/amazinginioluwa”

▫️Instagram-
@amazinginioluwa
@andreas.bradenberger

▫️Websites-
▪️ https://rarediseases.org/gard-rare-disease/phocomelia/
▪️ https://www.stlouischildrens.org/conditions-treatments/phocomelia
▪️ https://www.tgh.org/institutes-and-services/conditions/phocomelia
▪️ https://www.healthline.com/health/phocomelia
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If you have any other resources pertaining to Phocomelia please feel free to leave yourself or another page in the comments.
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#beautifullymadecommunity #beautiful #educate #inclusion #awareness
#kindnessmatters #luckyfinproject #beautifullymade #luckyfinsrock #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #differentisbeautiful
#strong #inclusiveeducation #limbdifferencespotlight

✨Limb Difference Spotlight✨

Congenital amputation is a condition where a person is born without a limb or portion of a limb. About 1 in 2,000 babies are born with congenital amputation each year.
The condition is often caused by amniotic band syndrome, which occurs when a free floating piece of amniotic sac tissue becomes entangled with a baby’s developing limb, cutting-off the blood supply and halting development. Amnion ruptures, a condition where the internal amniotic sac becomes separated from the outer portion, contributes to free-floating tissues. However, the exact causes of most cases cannot be exactly pinpointed.
Although congenital amputation does not usually hinder a person’s ability to adapt some people might consider prosthetics as a personal decision.

✨RESOURCES✨

▫️Facebook-

“The War Amps” (don’t let the name confuse you it is for children also!)
- https://www.facebook.com/TheWarAmps/
“Amputee Coalition”
- https://www.facebook.com/AmputeeCoalition/

▫️Instagram-

@stump_kitchen
@katelynjrichter
@mama.and.littlefish
@bayron777
@kathysol
@bridgetsalopek
@kpreyn
@mad4minnie

▫️Websites-

▫️https://globalgenes.org/disease/congenital-amputation/
▫️https://www.amputee-coalition.org/resources/amputations-in-childhood/
▫️https://www.merriam-webster.com/dictionary/congenital%20amputation

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If you have any other resources pertaining to Congenital Amputation a please feel free to leave yourself or another page in the comments. 👇
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#congenitalamputation #luckyfinproject #beautifullymade #luckyfinsrock #tenfingersareoverrated #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #adapt #beautiful #educate #connect #inclusion #positivity #limbdifferencespotlight

✨Limb Difference Spotlight✨

Congenital amputation is a condition where a person is born without a limb or portion of a limb. About 1 in 2,000 babies are born with congenital amputation each year.
The condition is often caused by amniotic band syndrome, which occurs when a free floating piece of amniotic sac tissue becomes entangled with a baby’s developing limb, cutting-off the blood supply and halting development. Amnion ruptures, a condition where the internal amniotic sac becomes separated from the outer portion, contributes to free-floating tissues. However, the exact causes of most cases cannot be exactly pinpointed.
Although congenital amputation does not usually hinder a person’s ability to adapt some people might consider prosthetics as a personal decision.

✨RESOURCES✨

▫️Facebook-

“The War Amps” (don’t let the name confuse you it is for children also!)
- https://www.facebook.com/TheWarAmps/
“Amputee Coalition”
- https://www.facebook.com/AmputeeCoalition/

▫️Instagram-

@stump_kitchen
@katelynjrichter
@mama.and.littlefish
@bayron777
@kathysol
@bridgetsalopek
@kpreyn
@mad4minnie

▫️Websites-

▫️https://globalgenes.org/disease/congenital-amputation/
▫️https://www.amputee-coalition.org/resources/amputations-in-childhood/
▫️https://www.merriam-webster.com/dictionary/congenital%20amputation

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If you have any other resources pertaining to Congenital Amputation a please feel free to leave yourself or another page in the comments. 👇
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#beautifullymadecommunity
#congenitalamputation #luckyfinproject #beautifullymade #luckyfinsrock #tenfingersareoverrated #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #adapt #beautiful #educate #connect #inclusion #positivity #limbdifferencespotlight

✨Limb Difference Spotlight✨
Symbrachydactyly has been subdivided by Blauth and Gekeler (see NIH study) into 4 types:
* (1) Short finger (brachymesophalangia): all 4 fingers are short and incompletely formed with a relatively normal thumb; middle phalanges may be missing with incomplete syndactyly. (2) Oligodactylic (atypical cleft hand): the central portion of the hand is aplastic, whereas the borders digits are less severely affected. (3) Monodactylic: the fingers are absent or aplastic, whereas the thumb is present. (4) Peromelic: resembles a transverse amputation at the metacarpophalangeal joint level, may have nubbins with or without nail remnants.
In most cases, children born with symbrachydactyly are able to adapt to their physical limitations and experience a fully functional life with no treatment.

Edit to add: Symbrachydactyly can also affect the feet which we will cover during Lower Limb Difference Spotlight.

✨RESOURCES✨

▫️Facebook:
- Helping Hands (Symbrachydactyly)
https://www.facebook.com/groups/21843487131/?ref=share

▫️Instagram:
@aussiehands
@campnolimits
@koalaacommunity
@handstoloveofficial
@grip_uf
@lucky_fin_project
@the_hhp
@nolimbitations_tx
@mad4minnie
@hdgreaser
@koalaacommunity
@reachcharity1
@thehandweredealt

▫️Websites:
- https://www.jhandsurg.org/article/S0363-5023(15)00829-1/fulltext

- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5030846/

-https://luckyfinproject.org

-https://aussiehands.org

-https://www.helpinghandproject.org

-https://nolimbitationstx.org/

-https://www.yourkoalaa.com

-https://reach.org.uk
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If you have any other resources pertaining to Symbrachydactyly please feel free to leave yourself or another page in the comments. 🤍
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#beautifullymadecommunity #kindnessmatters #symbrachydactyly #beautifullymade #luckyfinsrock #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #inclusion #beautiful #inclusiveeducation #kindness #share #spreadawareness #shareyourstory #connect #resources #differentisbeautiful #limbdifferencespotlight

✨Limb Difference Spotlight✨
Symbrachydactyly has been subdivided by Blauth and Gekeler (see NIH study) into 4 types:
* (1) Short finger (brachymesophalangia): all 4 fingers are short and incompletely formed with a relatively normal thumb; middle phalanges may be missing with incomplete syndactyly. (2) Oligodactylic (atypical cleft hand): the central portion of the hand is aplastic, whereas the borders digits are less severely affected. (3) Monodactylic: the fingers are absent or aplastic, whereas the thumb is present. (4) Peromelic: resembles a transverse amputation at the metacarpophalangeal joint level, may have nubbins with or without nail remnants.
In most cases, children born with symbrachydactyly are able to adapt to their physical limitations and experience a fully functional life with no treatment.

Edit to add: Symbrachydactyly can also affect the feet which we will cover during Lower Limb Difference Spotlight.

✨RESOURCES✨

▫️Facebook:
- Helping Hands (Symbrachydactyly)
https://www.facebook.com/groups/21843487131/?ref=share

▫️Instagram:
@aussiehands
@campnolimits
@koalaacommunity
@handstoloveofficial
@grip_uf
@lucky_fin_project
@the_hhp
@nolimbitations_tx
@mad4minnie
@hdgreaser
@koalaacommunity
@reachcharity1
@thehandweredealt

▫️Websites:
- https://www.jhandsurg.org/article/S0363-5023(15)00829-1/fulltext

- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5030846/

-https://luckyfinproject.org

-https://aussiehands.org

-https://www.helpinghandproject.org

-https://nolimbitationstx.org/

-https://www.yourkoalaa.com

-https://reach.org.uk
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If you have any other resources pertaining to Symbrachydactyly please feel free to leave yourself or another page in the comments. 🤍
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#beautifullymadecommunity #kindnessmatters #symbrachydactyly #beautifullymade #luckyfinsrock #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #inclusion #beautiful #inclusiveeducation #kindness #share #spreadawareness #shareyourstory #connect #resources #differentisbeautiful #limbdifferencespotlight

✨Limb Difference Spotlight✨
▫️ TARS: Thrombocytopenia Absent Radius Syndrome (TARS) is a rare genetic condition where children are born without radius bone (the bone that forms right behind the thumb into the fold of the elbow) often children with TARS have a low platelet count (the blood cells that play a huge role in clotting). Children with TARS usually have all 5 fingers - just not the Radius bone. Children with TARS may need blood transfusions to help stabilize their platelet count. Often kids with TARS have a little dimple in their wrist - this picture captures that. They are often sensitive to dairy, reflux is very common.

✨RESOURCES✨

▫️Facebook-

- Children with TAR Syndrome

https://www.facebook.com/groups/6645978714/?ref=share

▫️Instagram-

Follow
@tarsawarenesstexas
@uniquelyusbrothers
@eastons_adventure1
@uniquely_me_foundation
@babyzips.ca
@tarsyndromeassociation

▫️Websites-

- https://www.uniquelymefoundation.org/rare-info/

- https://www.babyzips.ca

- https://rarediseases.info.nih.gov/diseases/5116/tar-syndrome

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If you have any other resources pertaining to TAR Syndrome please feel free to leave yourself or another page in the comments. 🤍
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#beautifullymadecommunity #kindnessmatters #tars #tarsyndrome #raredisease #luckyfinproject #beautifullymade #luckyfinsrock #beautiful #tenfingersareoverrated #representationmatters #limbdifferenceawareness #luckyfin #warrior #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #limbdifferencespotlight

✨Limb Difference Spotlight✨
▫️ TARS: Thrombocytopenia Absent Radius Syndrome (TARS) is a rare genetic condition where children are born without radius bone (the bone that forms right behind the thumb into the fold of the elbow) often children with TARS have a low platelet count (the blood cells that play a huge role in clotting). Children with TARS usually have all 5 fingers - just not the Radius bone. Children with TARS may need blood transfusions to help stabilize their platelet count. Often kids with TARS have a little dimple in their wrist - this picture captures that. They are often sensitive to dairy, reflux is very common.

✨RESOURCES✨

▫️Facebook-

- Children with TAR Syndrome

https://www.facebook.com/groups/6645978714/?ref=share

▫️Instagram-

Follow
@tarsawarenesstexas
@uniquelyusbrothers
@eastons_adventure1
@uniquely_me_foundation
@babyzips.ca
@tarsyndromeassociation

▫️Websites-

- https://www.uniquelymefoundation.org/rare-info/

- https://www.babyzips.ca

- https://rarediseases.info.nih.gov/diseases/5116/tar-syndrome

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If you have any other resources pertaining to TAR Syndrome please feel free to leave yourself or another page in the comments. 🤍
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#beautifullymadecommunity #kindnessmatters #tars #tarsyndrome #raredisease #luckyfinproject #beautifullymade #luckyfinsrock #beautiful #tenfingersareoverrated #representationmatters #limbdifferenceawareness #luckyfin #warrior #disabilityawareness #awareness #education #representation #positivity #inclusion #connect #resources #limbdifferencespotlight

☀️#Reposting our LDS Series. Tag resources or new people to connect!!

✨Limb Difference Spotlight✨
We will be featuring different types of limb differences and what they can look like! We’re doing this in hopes of highlighting limb difference specific resources and showing how each are beautifully made in their individual ways.
Let us know resources to add in the comments, or say hello to connect!👇🏽
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✨RESOURCES✨

▫️Facebook-

Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) Syndrome

https://www.facebook.com/groups/EECSyndrome/?ref=share

▫️Instagram-

@crosslandshannon
@rochellejennam_
@carac719

▫️Websites-

https://www.nfed.org
————————————————————————
If you have any other resources pertaining to Ectrodactyly please feel free to leave yourself or another page in the comments. 🤍
We will link this in our website when it is live but also in our Story Highlights under Education.
•
•
#beautifullymadecommunity #kindnessmatters #ectrodactyly #luckyfinproject #beautifullymade #luckyfinsrock #tenfingersareoverrated #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #beautiful #inclusion #connect #resources #inclusiveeducation #limbdifferencespotlight

☀️#Reposting our LDS Series. Tag resources or new people to connect!!

✨Limb Difference Spotlight✨
We will be featuring different types of limb differences and what they can look like! We’re doing this in hopes of highlighting limb difference specific resources and showing how each are beautifully made in their individual ways.
Let us know resources to add in the comments, or say hello to connect!👇🏽
•
•
✨RESOURCES✨

▫️Facebook-

Ectrodactyly-Ectodermal Dysplasia-Clefting (EEC) Syndrome

https://www.facebook.com/groups/EECSyndrome/?ref=share

▫️Instagram-

@crosslandshannon
@rochellejennam_
@carac719

▫️Websites-

https://www.nfed.org
————————————————————————
If you have any other resources pertaining to Ectrodactyly please feel free to leave yourself or another page in the comments. 🤍
We will link this in our website when it is live but also in our Story Highlights under Education.
•
•
#beautifullymadecommunity #kindnessmatters #ectrodactyly #luckyfinproject #beautifullymade #luckyfinsrock #tenfingersareoverrated #representationmatters #limbdifferenceawareness #luckyfin #disabilityawareness #awareness #education #representation #positivity #beautiful #inclusion #connect #resources #inclusiveeducation #limbdifferencespotlight

“Hands to Love is offering FREE virtual adaptive yoga classes for children with upper limb differences. The goal is to help boost your child’s confidence by improving their strength, balance, flexibility, and posture, to help them overcome everyday challenges. An additional family member is also welcome to join in the fun!

Class Dates are as follows:

Toddler Class:
Every Monday September 23- November 4th @ 5:00 P.M. EST

Teenager Class:
Every Wednesday September 25- November 6th @ 5:00 P.M. EST

Please contact Angel@handstolove.org to sign-up!” ——— @handstoloveofficial
.
.
#handstolove #yoga #support #limbdifference #beautiful #beautifullymade #adaptive #adaptiveyoga

“Hands to Love is offering FREE virtual adaptive yoga classes for children with upper limb differences. The goal is to help boost your child’s confidence by improving their strength, balance, flexibility, and posture, to help them overcome everyday challenges. An additional family member is also welcome to join in the fun!

Class Dates are as follows:

Toddler Class:
Every Monday September 23- November 4th @ 5:00 P.M. EST

Teenager Class:
Every Wednesday September 25- November 6th @ 5:00 P.M. EST

Please contact Angel@handstolove.org to sign-up!” ——— @handstoloveofficial
.
.
#handstolove #yoga #support #limbdifference #beautiful #beautifullymade #adaptive #adaptiveyoga

“When you finally get to meet someone who’s just like you 🖤”

Posted with permission from @shayyraee 🫶
.
.
#sweetfriends #newfriends #beautifullymade #beautiful #limbdifference #spreadkindness #positivity

“When you finally get to meet someone who’s just like you 🖤”

Posted with permission from @shayyraee 🫶
.
.
#sweetfriends #newfriends #beautifullymade #beautiful #limbdifference #spreadkindness #positivity

“Days like this…”
#repost with permission from @wildlikesage
.
.
BMC-Happy Monday friends! Wishing everyone a beautiful week ahead ☀️
.
.
#beautifullymade #beautifullymadecommunity #beautiful #spreadkindness #limbdifference

“Days like this…”
#repost with permission from @wildlikesage
.
.
BMC-Happy Monday friends! Wishing everyone a beautiful week ahead ☀️
.
.
#beautifullymade #beautifullymadecommunity #beautiful #spreadkindness #limbdifference

“Upper Limb Difference Day 2024
.
I was thrilled to participate in the 3rd annual Upper Limb Difference Day as a panelist. The event, a collaboration between @beautifullymade_community and the Orthopedic Department at @bostonchildrens hospital, took place at @lookoutfarm in Natick, Massachusetts on a gorgeous afternoon!
.
Speaking as a panelist about technology adaptations and overuse syndrome awareness was such a highlight, along with learning from fellow panelists Dr. Josh Weiss, @lauren.schoeller, @katchamblin, and @ela.pirri!
.
I was especially excited to talk to parents of children with upper limb differences from my home state! I always love showing adaptative products and chatting about occupational therapy. It’s such a joy seeing little ones jumping rope with an @eazyhold silicone strap attached to the handle and discovering @mimitens mittens that don’t fall off!
.
It was fabulous to meet in person @carac719 and @lauren.schoeller, the 🩷 and brains behind @beautifullymade_community.
.
It was wonderful to team up with the other volunteers:
🩷 @katienoahmaya - my dear college friend took many photos & hosted me for the weekend
🩷 @sota_tufts - while I didn’t get a chance to connect with the OTD students from Tufts (my grad school alma mater), I loved that they were running the kids’ activities!
🩷 @grip_uf - this team from the University of Florida also runs stations at @handstoloveofficial Hand Camp
🩷 @acorn_cottage_press - so great to meet author Katherine Lockwood and get a signed copy of her book Why Me Mama?
🩷 BCH - docs, nurses, & other volunteers”

#Repost with permission from @ontheotherhandtherapy
.
.
#LimbDifferences #LimbDifferenceAwareness #Community #beautifullymadecommunity #beautiful #beautifullymade #bostonchildrens #bostonchildrenshospital #occupationaltherapist #occupationaltherapy #ot #childcare #disability #disabilityawareness #limbdifference #limbdifferenceawareness #limbloss #luckyfin #amputees #prosthetics #symbrachydactyly #amnioticbandsyndrome #disabledchildren #iamadaptive

“Upper Limb Difference Day 2024
.
I was thrilled to participate in the 3rd annual Upper Limb Difference Day as a panelist. The event, a collaboration between @beautifullymade_community and the Orthopedic Department at @bostonchildrens hospital, took place at @lookoutfarm in Natick, Massachusetts on a gorgeous afternoon!
.
Speaking as a panelist about technology adaptations and overuse syndrome awareness was such a highlight, along with learning from fellow panelists Dr. Josh Weiss, @lauren.schoeller, @katchamblin, and @ela.pirri!
.
I was especially excited to talk to parents of children with upper limb differences from my home state! I always love showing adaptative products and chatting about occupational therapy. It’s such a joy seeing little ones jumping rope with an @eazyhold silicone strap attached to the handle and discovering @mimitens mittens that don’t fall off!
.
It was fabulous to meet in person @carac719 and @lauren.schoeller, the 🩷 and brains behind @beautifullymade_community.
.
It was wonderful to team up with the other volunteers:
🩷 @katienoahmaya - my dear college friend took many photos & hosted me for the weekend
🩷 @sota_tufts - while I didn’t get a chance to connect with the OTD students from Tufts (my grad school alma mater), I loved that they were running the kids’ activities!
🩷 @grip_uf - this team from the University of Florida also runs stations at @handstoloveofficial Hand Camp
🩷 @acorn_cottage_press - so great to meet author Katherine Lockwood and get a signed copy of her book Why Me Mama?
🩷 BCH - docs, nurses, & other volunteers”

#Repost with permission from @ontheotherhandtherapy
.
.
#LimbDifferences #LimbDifferenceAwareness #Community #beautifullymadecommunity #beautiful #beautifullymade #bostonchildrens #bostonchildrenshospital #occupationaltherapist #occupationaltherapy #ot #childcare #disability #disabilityawareness #limbdifference #limbdifferenceawareness #limbloss #luckyfin #amputees #prosthetics #symbrachydactyly #amnioticbandsyndrome #disabledchildren #iamadaptive

“Yesterday, we celebrated the 3rd Congenital Upper Limb Difference Day with my amazing team at
@beautifullymade_community, in collaboration with the Orthopaedic Departmemt at @bostonchildrens
Over the past few years, this event has grown into a beautiful gathering that fosters meaningful connection between families with limb differences. The joy, support, and sense of community shared yesterday was truly inspiring
We’re so grateful to everyone who came out to celebrate with us. I loved seeing new friendships form and existing ones strengthen.
It was extra special to see friends who l’ve connected with on social media but never met in-person before
We can’t wait to see how this event continues to grow, creating even more opportunities for connection and support in the years to come! 💗🤘🏻” - @lauren.schoeller

✨Special thanks to the organizations who joined us and shined a light on their incredible missions. Hope we can continue doing this together for years to come.
@grip_uf
@ontheotherhandtherapy
@acorn_cottage_press

- thank you @eazyhold , @mimitens & @adventuresofroxyroo for sending us products to give to the families.

✨Super thankful for all the volunteers from @sota_tufts and BCH who truly made the day so special.

✨Thank you to Dr Weiss for being our main speaker- he was incredible.
Thank you to our panelists @ela.pirri , @lauren.schoeller , @ontheotherhandtherapy , @katchamblin , and Dr Weiss for bringing so many great, insightful and educational discussions- that was a highlight of the day I won’t forget!!

✨Thank you @lookoutfarm and their staff for all their help and being the best place to host for the second year in a row!

✨Most importantly, thank you to all of the families for making the trip to share this day together! 💗💗💗
.
.
#LimbDifferences #LimbDifferenceAwareness
#Community #beautifullymadecommunity #beautiful #beautifullymade #bostonchildrens #bostonchildrenshospital

“Yesterday, we celebrated the 3rd Congenital Upper Limb Difference Day with my amazing team at
@beautifullymade_community, in collaboration with the Orthopaedic Departmemt at @bostonchildrens
Over the past few years, this event has grown into a beautiful gathering that fosters meaningful connection between families with limb differences. The joy, support, and sense of community shared yesterday was truly inspiring
We’re so grateful to everyone who came out to celebrate with us. I loved seeing new friendships form and existing ones strengthen.
It was extra special to see friends who l’ve connected with on social media but never met in-person before
We can’t wait to see how this event continues to grow, creating even more opportunities for connection and support in the years to come! 💗🤘🏻” - @lauren.schoeller

✨Special thanks to the organizations who joined us and shined a light on their incredible missions. Hope we can continue doing this together for years to come.
@grip_uf
@ontheotherhandtherapy
@acorn_cottage_press

- thank you @eazyhold , @mimitens & @adventuresofroxyroo for sending us products to give to the families.

✨Super thankful for all the volunteers from @sota_tufts and BCH who truly made the day so special.

✨Thank you to Dr Weiss for being our main speaker- he was incredible.
Thank you to our panelists @ela.pirri , @lauren.schoeller , @ontheotherhandtherapy , @katchamblin , and Dr Weiss for bringing so many great, insightful and educational discussions- that was a highlight of the day I won’t forget!!

✨Thank you @lookoutfarm and their staff for all their help and being the best place to host for the second year in a row!

✨Most importantly, thank you to all of the families for making the trip to share this day together! 💗💗💗
.
.
#LimbDifferences #LimbDifferenceAwareness
#Community #beautifullymadecommunity #beautiful #beautifullymade #bostonchildrens #bostonchildrenshospital

“Symbrachydactyly......my upper limb difference.
I didn’t actually work out the official name of my upper limb difference until 2 years ago, when I saw a post by @beautifullymade_community and read the description of Sym and realized that this was what I had been born with. My parents were not ever given an “official” name for my upper limb difference. I was born with Fibular Hemimelia too, but that was easier to diagnose because a simple X-ray revealed the total absence of a fibula!!!

I have had 3 lots of surgery (I think!) on my left hand since birth. The first two were to separate out the bulky section of my hand into two fingers. They were able to do this because each “finger” contained a sufficient enough bone structure to be able to do so. I have movement in 2 joints of my middle finger but only minimal movement in 1 joint of my little finger. Both of these surgeries took place at @greatormondst when I was not even a year old! I then had a 3rd surgery in this hand when I was about 10 to attempt to straighten the bone through the joint by use of a metal pin......this did work for that joint, but a few years later, another joint became bent. It has never bothered me that much in adult life to have any further surgery.

I may not have 5 fingers, nowhere near......and they don’t all bend at all joints......not even close! BUT, my little sym hand can still do lots of things. Here are a few standouts:
🔸Can grip the steering wheel so I’m able to drive an unadapted car
🔸Can hold a 2 pint of milk with my one slightly bent finger!
🔸Can hold a glass of wine.....and not spill it 🤣
🔸Can manicure my right hand (and quite well if I don’t say do myself!! Years of practice!!)
🔸Can hold hands with my boys.....although they all say they prefer the other one!! “

#repost from @mumof3andamputee 🤍🤍🤍
.
.
#limbdifference #limbdifferenceawareness #llldam #llldam2024 #symbrachydactyly #limbdifferenceawarenessmonth #beautiful #beautifullymade #inclusiveeducation #limbdifferencespotlight

“Symbrachydactyly......my upper limb difference.
I didn’t actually work out the official name of my upper limb difference until 2 years ago, when I saw a post by @beautifullymade_community and read the description of Sym and realized that this was what I had been born with. My parents were not ever given an “official” name for my upper limb difference. I was born with Fibular Hemimelia too, but that was easier to diagnose because a simple X-ray revealed the total absence of a fibula!!!

I have had 3 lots of surgery (I think!) on my left hand since birth. The first two were to separate out the bulky section of my hand into two fingers. They were able to do this because each “finger” contained a sufficient enough bone structure to be able to do so. I have movement in 2 joints of my middle finger but only minimal movement in 1 joint of my little finger. Both of these surgeries took place at @greatormondst when I was not even a year old! I then had a 3rd surgery in this hand when I was about 10 to attempt to straighten the bone through the joint by use of a metal pin......this did work for that joint, but a few years later, another joint became bent. It has never bothered me that much in adult life to have any further surgery.

I may not have 5 fingers, nowhere near......and they don’t all bend at all joints......not even close! BUT, my little sym hand can still do lots of things. Here are a few standouts:
🔸Can grip the steering wheel so I’m able to drive an unadapted car
🔸Can hold a 2 pint of milk with my one slightly bent finger!
🔸Can hold a glass of wine.....and not spill it 🤣
🔸Can manicure my right hand (and quite well if I don’t say do myself!! Years of practice!!)
🔸Can hold hands with my boys.....although they all say they prefer the other one!! “

#repost from @mumof3andamputee 🤍🤍🤍
.
.
#limbdifference #limbdifferenceawareness #llldam #llldam2024 #symbrachydactyly #limbdifferenceawarenessmonth #beautiful #beautifullymade #inclusiveeducation #limbdifferencespotlight

Join us for our 2024 Limb Difference Day Event hosted by Boston Children’s Hospital Upper Orthopedic Team and BMC.

**Each year we love to have other organizations join us so that we can share and spread more resources. Please reach out if you’re interested and if anything we would love to provide the families who come with fliers etc to take home.

DM or Email: Beautifullymadecommunity@gmail.com
if you would like more info. !! 💗

(The event is on June 15th near Boston MA)

Join us for our 2024 Limb Difference Day Event hosted by Boston Children’s Hospital Upper Orthopedic Team and BMC.

**Each year we love to have other organizations join us so that we can share and spread more resources. Please reach out if you’re interested and if anything we would love to provide the families who come with fliers etc to take home.

DM or Email: Beautifullymadecommunity@gmail.com
if you would like more info. !! 💗

(The event is on June 15th near Boston MA)

“You shouldn’t have to do this alone 🫶

When I realized I wasn’t alone on this journey, that was a complete game changer for me.

In that moment I knew I wanted to …
🌟Help
🌟Educate
🌟Empower
other families as they navigate their own personal roads. The beginning can be very stressful and overwhelming. Things do get easier with time.

It’s nice to know that there are other individuals in this world who have walked the same path as you and experienced the same feelings and emotions. What a sigh of relief! 😮‍💨

I hope my page brings you inspiration, hope and joy. Angelo is proof that children with rare conditions can and will live beautiful lives! Come follow along with us and learn what’s it’s like to be rare!! 🙌🦓

♥️Follow @iam_fearfully_made and become a part of this amazing community we have created! “

#Repost with permission from @iam_fearfully_made 🤍🤍🤍
.
.
#limbdifferenceawareness #limbdifferenceawarenessmonth #beautiful #beautifullymade #support #resources #community

“You shouldn’t have to do this alone 🫶

When I realized I wasn’t alone on this journey, that was a complete game changer for me.

In that moment I knew I wanted to …
🌟Help
🌟Educate
🌟Empower
other families as they navigate their own personal roads. The beginning can be very stressful and overwhelming. Things do get easier with time.

It’s nice to know that there are other individuals in this world who have walked the same path as you and experienced the same feelings and emotions. What a sigh of relief! 😮‍💨

I hope my page brings you inspiration, hope and joy. Angelo is proof that children with rare conditions can and will live beautiful lives! Come follow along with us and learn what’s it’s like to be rare!! 🙌🦓

♥️Follow @iam_fearfully_made and become a part of this amazing community we have created! “

#Repost with permission from @iam_fearfully_made 🤍🤍🤍
.
.
#limbdifferenceawareness #limbdifferenceawarenessmonth #beautiful #beautifullymade #support #resources #community

“My sweet, smart, sassy girl! You continue to show you can do whatever you put your mind too! Climbing the rock wall on the swing set, riding your bike, loving the outdoors, and having the biggest heart! I can’t wait to see what you do next!
Happy limb difference awareness month! @lucky_fin_project @beautifullymade_community “

#repost with permission from @mljackson91 🤍🤍🤍
.
.
#limbdifferenceawareness #limbdifferenceawarenessmonth #beautiful #beautifullymade #luckyfin

“My sweet, smart, sassy girl! You continue to show you can do whatever you put your mind too! Climbing the rock wall on the swing set, riding your bike, loving the outdoors, and having the biggest heart! I can’t wait to see what you do next!
Happy limb difference awareness month! @lucky_fin_project @beautifullymade_community “

#repost with permission from @mljackson91 🤍🤍🤍
.
.
#limbdifferenceawareness #limbdifferenceawarenessmonth #beautiful #beautifullymade #luckyfin

“He was willing to dare greatly.

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly…and if he fails, at least fails while daring greatly...” - Roosevelt

We sat as a family to watch this last MCJ episode. Although we knew the outcome, this was our first time to watch it.
After we wiped our tears, I wanted to share what I noticed about Miles during his time on MasterChef Junior, especially this last episode.
-Miles gives his teams all he’s got. Blood, sweat, and tears, he fought his hardest to see his teams win.
-It may put more spotlight and vulnerability on him, but Miles was seen as a leader, by the judges and his fellow contestants/ friends. You could tell they respected him as a leader and friend.
-He doesn’t give himself any excuses. Even when presented with the chance, he didn’t. He owned the fact that he was told he was a leader and any failure would fall on him.
-Miles was able to lead with strength, but not force. Even when judges were on him, he remained respectful throughout. Many adults wouldn’t be able to keep their composure.
-We recently talked about bravery. We were standing outside of a ride at Disney that one kid loved and another kid disliked, because they got scared riding it years ago. We talked about how we shouldn’t compare what makes us feel brave to someone else. To someone, bravery looks like riding a scary ride. To someone else, it is getting the strength to leave their house each day. For Miles, it was to put himself out there, to represent underrepresented communities, and to cook for some pretty amazing chefs.
-Miles said, “If I have to go home, at least I get to see some of my best friends move on!” So, please keep watching. Continue to support and cheer on our friends!! “

#Repost with permission from @ang_platt 🤍🤍🤍
.
.
#masterchefjunior #yeschef #tenfingersareoverrated #luckyfinproject #disabilityawareness #representation #representationmatters #limbdifferenceawareness #limbdifferenceawarenessmonth

“He was willing to dare greatly.

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly…and if he fails, at least fails while daring greatly...” - Roosevelt

We sat as a family to watch this last MCJ episode. Although we knew the outcome, this was our first time to watch it.
After we wiped our tears, I wanted to share what I noticed about Miles during his time on MasterChef Junior, especially this last episode.
-Miles gives his teams all he’s got. Blood, sweat, and tears, he fought his hardest to see his teams win.
-It may put more spotlight and vulnerability on him, but Miles was seen as a leader, by the judges and his fellow contestants/ friends. You could tell they respected him as a leader and friend.
-He doesn’t give himself any excuses. Even when presented with the chance, he didn’t. He owned the fact that he was told he was a leader and any failure would fall on him.
-Miles was able to lead with strength, but not force. Even when judges were on him, he remained respectful throughout. Many adults wouldn’t be able to keep their composure.
-We recently talked about bravery. We were standing outside of a ride at Disney that one kid loved and another kid disliked, because they got scared riding it years ago. We talked about how we shouldn’t compare what makes us feel brave to someone else. To someone, bravery looks like riding a scary ride. To someone else, it is getting the strength to leave their house each day. For Miles, it was to put himself out there, to represent underrepresented communities, and to cook for some pretty amazing chefs.
-Miles said, “If I have to go home, at least I get to see some of my best friends move on!” So, please keep watching. Continue to support and cheer on our friends!! “

#Repost with permission from @ang_platt 🤍🤍🤍
.
.
#masterchefjunior #yeschef #tenfingersareoverrated #luckyfinproject #disabilityawareness #representation #representationmatters #limbdifferenceawareness #limbdifferenceawarenessmonth

“April is limb difference awareness month 🧡🦾

I often think about how nervous and heartbroken I felt after our 20 week scan when they told us they saw multiple concerns. I remember wishing I could just keep him in my belly forever, afraid of what would happen once he (hopefully) was here- wishing I could protect him and keep him safe. His birth was tough and his NICU stay was full of ups and downs, but Jesus always knows what He’s doing and He made him strong & extra special!

He has seen more specialists than we can keep track of (thank goodness for spreadsheets)! He has been poked and prodded and scanned, yet he is happy 99.9% of the time! He is adventurous, he is determined, and he is feisty (living up to his beautiful red locks)!

I know he is going to face challenges, but I’m confident he will persevere and figure out a way to do whatever he sets his mind to! We are so lucky to have the best friends & family who support, encourage, and accept him. I follow so many amazing accounts because of the @lucky_fin_project. It is comforting to know although he is rare (1 in 1,900 births in the US) he has friends who look like him near & far! ***One Texas friend just rocked it on Master Chef Junior- we are big fans @miles_platt!!!

We love spreading awareness for our sweet Lay Lay 🧡 check out some of our favorite limb different books and consider adding one to your library at home, or gift to your child’s teacher!

The Lucky Fin Project has a virtual 5K fundraiser for limb difference awareness going on until 5/31- @pswear444 and I are making a goal to walk 50 miles (most likely towing 3 kids and a dog along 😆) for our sweet #laytonswear- more info coming on another post if you’d like to join in on Team Layton! “

#repost with permission from @luckyfin_laytonswear 🤍🤍🤍
.
.
#limbdifferenceawarenessmonth #luckyfin #limbdifference #beautiful #beautifullymade

“April is limb difference awareness month 🧡🦾

I often think about how nervous and heartbroken I felt after our 20 week scan when they told us they saw multiple concerns. I remember wishing I could just keep him in my belly forever, afraid of what would happen once he (hopefully) was here- wishing I could protect him and keep him safe. His birth was tough and his NICU stay was full of ups and downs, but Jesus always knows what He’s doing and He made him strong & extra special!

He has seen more specialists than we can keep track of (thank goodness for spreadsheets)! He has been poked and prodded and scanned, yet he is happy 99.9% of the time! He is adventurous, he is determined, and he is feisty (living up to his beautiful red locks)!

I know he is going to face challenges, but I’m confident he will persevere and figure out a way to do whatever he sets his mind to! We are so lucky to have the best friends & family who support, encourage, and accept him. I follow so many amazing accounts because of the @lucky_fin_project. It is comforting to know although he is rare (1 in 1,900 births in the US) he has friends who look like him near & far! ***One Texas friend just rocked it on Master Chef Junior- we are big fans @miles_platt!!!

We love spreading awareness for our sweet Lay Lay 🧡 check out some of our favorite limb different books and consider adding one to your library at home, or gift to your child’s teacher!

The Lucky Fin Project has a virtual 5K fundraiser for limb difference awareness going on until 5/31- @pswear444 and I are making a goal to walk 50 miles (most likely towing 3 kids and a dog along 😆) for our sweet #laytonswear- more info coming on another post if you’d like to join in on Team Layton! “

#repost with permission from @luckyfin_laytonswear 🤍🤍🤍
.
.
#limbdifferenceawarenessmonth #luckyfin #limbdifference #beautiful #beautifullymade

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