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

Click on the above dropdown to view more.

Most Recent Stories

Jessie and Nathan: DiGeorge syndrome, Multiple Disabilites

Listen to Story

During a 24 week ultrasound, Jessie and Nathan were told that their unborn son, Ammon, had a heart condition as well as clubbed feet. After they met with a specialist, they were encouraged to abort their son. They choose to continue with the pregnancy and Ammon was born with several other disabilities. Despite all of this he has enriched their lives with his happy personality.

[...]
Read More

Genie: ADNP syndrome

Listen to Story

Genie had extensive genetic testing while pregnant with her son Roland. The tests showed nothing abnormal. Very shortly after birth, Genie and other specialist noticed some abnormalities. It wasn’t until Roland was 4 years old that he received a diagnosis- ADNP syndrome.

[...]
Read More

Gina- Down syndrome and Spinal Muscular Atrophy

Listen to Story Read Story

Immediately after Gina’s daughter Larkin was born, Gina could tell she had Down syndrome. When Larkin was 10 weeks old, she was diagnosed with Spinal Muscular Atrophy Type 1, which is the most severe type. Gina says one of the hardest things is not being able to give her other children as much attention. Larkin is now 12 years old, and is the only known person to have lived with both Down syndrome and SMA.

[...]
Read More

Kaitlin: Chromosome Deletion, CHD, Neurological Differences

Listen to Story Read Story

Kaitlin had an average pregnancy, and delivery. Shorty after Mason was born, Kaitlin was told by doctors that he had “dysmorphic features.” He has a deletion of two separate chromosomes, a congenital heart defect, congestive heart failure, microcephaly, auditory neuropathy and many others. Despite the challenges, he is the light of his family’s life.

[...]
Read More

Nicole- Single Gene Mutation

Listen to Story Read Story

While pregnant, Nicole receive a pretty grim diagnosis for her unborn son, Jacob. Doctors found a cyst on his brain, and other abnormal development. Nicole did not think she would be able to carry Jacob to term, but through a second and third opinion, they were given more positive news and gained more hope. Jacob spent the majority of his first year in the hospital, and was diagnosed with Tracheomalacia, an abnormal brain stem, and a single gene mutation- that no one else in the world has been diagnosed with.

[...]
Read More

Amanda: Pfeiffer syndrome

Listen to Story Read Story

During a prenatal ultrasound, Amanda’s doctors discovered that her daughter, Emmy had some complications. Emmy’s skull had begun to fuse together- a condition known as Craniostenosis. Shortly after Emmy was born, she was diagnosed with Pfeiffer syndrome. Emmy is now 5 months old, and brings so much joy to her family. Even though sweet Emmy may not look typical, she has had no neurological complications- she is right on par with typical babies her age.

[...]
Read More

Ann: Twins with Spastic Quadriplegic Cerebral Palsy

Listen to Story

About 8 hours after her twin daughters, Kay and Karen and were born, they were moved to the NICU because a nurse noticed some seizure activity. Shortly after, both girls were diagnosed with Spastic Quadriplegic Cerebral Palsy. After caring for her daughters for 41 years, Ann opens up about the joys and challenges she has experienced raising her daughters.

[...]
Read More

Nikki and Alan: Down syndrome

Listen to Story Read Story

Nikki and Alan were shocked when their newborn son Wil received a Down syndrome diagnosis. While Nikki immediately felt peace, Alan felt his entire world was crumbling. It took Alan over a month of grieving before he was able to move forward.

They now raise money for worldwide special needs adoption, and continued education for people with disabilities by selling “Wil can fly” calendars. You can find out more by visiting wilcanfly.com

[...]
Read More