Stories

Advice and guidance from medical professionals and internet searches can only go so far, and the information and images are often scary. The best source of information, to know what it’s really like to have a child with a disability or life-long condition, is from another parent who has a similar child. We are honored and inspired by the parents who have shared their story with us. They inform and encourage others, in similar circumstances, just starting their journey.

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

Tori and Matt: Cerebral Palsy due to Cytomegalovirus or CMV

Listen to Story Read Story

When Tori and Matt’s daughter failed to sit up or roll over by the time she was 9 months,  they started to worry. Their Pediatrician referred them to a Pediatric Developmental Specialist. Through MRI testing, they found that Tori got Cytomegolavirus (CMV) while pregnant, which resulted in their daughter having Cerebral Palsy.

 

[...]
Read More

Casey: Limb Difference

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

Alyssa: Prader-Willi syndrome

Listen to Story Read Story

Immediately after Kimber was born, doctors knew there was something wrong. She slept constantly, and she was very limp. Doctors didn’t expect her to live past 6 months. After a few weeks a genetic test revealed she had Prader-Willi syndrome.

Alyssa was relieved to get this diagnosis , because this meant Kimber would live longer than the 6 months doctors predicted; those with Prader-Willi typically have an average lifespan.

Kimber has taught her parents, and those around her to love deeply and unconditionally.

[...]
Read More

Snapshot story-Ariel: Cornelia de Lange syndrome

Read Story

While pregnant, Ariel had a nuchal translucency test on her baby. Doctor’s found that the fluid pocket on the back of their baby’s neck was measuring larger than normal, and later doctors discovered an abnormality with their baby’s heart. At 34 weeks pregnant they were told that their baby was not measuring up to gestational age.

After Mila was born she was diagnosed with Cornelia de Lange syndrome.

 

[...]
Read More

Nancy and Daniel: PPP2R5D

Listen to Story Read Story

Nancy and Daniel have a six year old little girl named Avianna. When Avianna was a few months old, Nancy and Daniel started noticing that she wasn’t reaching milestones that other babies of the same age were. They started Avianna in physical therapy and she was still not progressing, so they were urged to see a geneticist and neurologist. It took doctors almost three years to diagnose Avianna with a variation of what is known as PPP2R5D. This condition is so rare that there are only 28 known cases in the world.

Avianna has severe scoliosis, low muscle tone and speech issues, so she has multiple therapies to attend in and out of school. Nancy and Daniel say that Avianna is a fighter who is always smiling and if it weren’t for her, they would not have been able to advocate and raise awareness for such a rare condition.

[...]
Read More

Sarah: Potocki- Shaffer syndrome

Listen to Story Read Story

Sarah had an ultrasound scare at a 20 week prenatal appointment. At a subsequent appointment with a specialist, she was told her baby was fine and not to worry. So after Betty was born, Sarah was shocked when a pediatrician told her she was global developmental delayed.

After many appointments and genetic testing, Betty was diagnosed with Potocki-Shaffer syndrome. Although Potocki-Shafffer syndrome is very rare, Sarah rallied and found online support groups, and other families with similar circumstances. She has an  awesome website, Bringing Up Betty, and does a Podcast that helps bring special needs families together.

[...]
Read More

Miggy: Microgastria and Limb Reduction Complex

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

Ann: Ataxic Cerebral Palsy and seizure disorder

Listen to Story Read Story

Ann has been a tireless advocate for her daughter Chrissy, who was diagnosed with Ataxic Cerebral Palsy and a seizure disorder when she was almost a year old.

Chrissy was born in the 1970’s when there were few resources. There was little area support for for Ann or Chrissy, so Ann created her own program, and parent network. She lobbied and joined the legislative coalition. She was laughed at, people told her she would never succeed or get funding for her program. Ann proved them wrong.

[...]
Read More