Spina Bifida Stories

We believe there is no better way to elicit a sense of understanding, connection and care within a community than by sharing stories. Stories help us learn from one another and also help raise awareness about everyone affected by Spina Bifida.  Do you have a story to share? Email us at [email protected].

Stories from parents of children with Spina Bifida


Mary Cogan Holleran: A Person, not a Diagnosis

After Liam was born, he became a real person and not a diagnosis.

Mary Cogan Hollerman, Liam's mom

Stories of teenagers with Spina Bifida


Sarah Avram: Being Unique is Better than Being Perfect

Being unique is better than being perfect

- Sarah Avram

Stories from adults with Spina Bifida


Mark Deschamp: Challenges on Finding Adult Care

I don’t think the process of finding a health care professional to see me, just because I have Spina Bifida, should be this hard.

- Mark Deschamp