Limb Difference

We are actively collecting and updating new stories. We welcome you to check back often, and to share your story. If you or someone you know has a story to share, please contact us to add your story.

Share Your Story

Select a Category to View Stories

Most Recent Stories

Megan and Josh: Apert syndrome and Hydrocephalus

" target="_blank">Listen to Story Read Story

When Megan and Josh’s son Edison was born, they both noticed some abnormalities, including syndactyly, immediately. Megan and Josh met with a pediatrician, who then sent Edison to a children’s hospital, where Apert syndrome  was confirmed. Edison was later diagnosed with hydrocephalus.

[...]
Read More

Katherine and Jeff: Ellis-van Creveld syndrome

" target="_blank">Listen to Story Read Story

While pregnant, Katherine’s baby Arabella was diagnosed, and then re-diagnosed with several conditions that were all fatal forms of Dwarfism, including Thanatophoric Dysplasia, Short Rib Polydactyly syndrome,  and a major heart defect.

She and her husband Jeff were told to either terminate the pregnancy, or plan a funeral. They chose to continue the pregnancy. Arabella is now a beautiful 2 year old. She was officially diagnosed with Ellis-van Creveld syndrome, a sub-type of Short Rib Polydactyly syndrome. This syndrome has a 30-50 percent survival rate.

Katherine is now expecting her third child, Shiloh. Shiloh has also been diagnosed EVC, as well as a major heart defect. They do not know if Shiloh  will live, but are grateful for everyday they have with her.

 

[...]
Read More

Casey: Limb Difference

" target="_blank">Listen to Story Read Story

At Casey’s 20 week prenatal ultrasound, doctor’s could not find any arms or hands. Their baby Owen was diagnosed with Limb Difference. Casey was in shock, and in a state of utter grief.

When Owen was born, they realized they didn’t see his diagnosis, they saw their beautiful baby boy.

Casey now considers it an honor to be Owen’s mother. She is humbled knowing she was chosen to be the mother of such an amazing little boy.

[...]
Read More

Miggy: Microgastria and Limb Reduction Complex

" target="_blank">Listen to Story Read Story

During a prenatal ultrasound, Miggy was told all of her baby’s limbs were either misshapen, deformed, or missing bones all together. Doctor’s diagnosed her daughter with Microgastria and Limb Reduction Complex. 

Her daughter is now 7, and is beautiful, bright and has a great sense of humor. She has learned to adapt to the world around her; using her feet as if they were hands.

Miggy has been an amazing advocate for her daughter, and for other special need families and children. She has as fantastic blog, This Little Miggy, where she does a “special needs spotlight” and has shared  over 150 stories.

[...]
Read More

Adrianne and Jason: Tetra-Amelia syndrome

" target="_blank">Listen to Story Read Story

Adrianne and Jason had two biological daughters when they adopted their son and then their third daughter Maria from the Philippines. Maria has Tetra Amelia syndrome, a meaning she was born with the absence of all four limbs. Adrianne and Jason had no experience with special needs children, so they had to search and find resources, ask questions, and prepare to adopt Maria. Maria has been home with her new family for almost a year and a half. She has overcome many limitations and shown her family that, despite her disability, she can be happy and enjoy life like anyone else.

[...]
Read More