Stories: Living with Spina Bifida

Katie’s Story

Katie was born with spina bifida. Although she has faced challenges, nothing holds her back. Her mother shares, “there is nothing she has wanted to do, that we haven't been able to get her to do with some modifications.” Read more of her uplifting story below.

At 19 weeks of her second pregnancy, Julie and her husband, Andy, were excited because they were having an ultrasound to learn the sex of their second child. They never imagined the test would reveal anything more dramatic; however, they were told their baby would be born with spina bifida.

Their daughter, Katie, was born December 26, 2001. She is now 10 years old and has enjoyed "dancing" with the help of her wheelchair since the age of three, inspiring other children with disabilities to dance as well. Katie is a straight "A" student who also plays baseball, soccer, takes music classes, sings in the church choir, and goes to a spina bifida camp each summer. “There is nothing she has wanted to do, that we haven't been able to get her to do with some modifications,” says Julie.

"Do I wish she did not have spina bifida and could run and play like other children? Yes. Life is tough for her. Simple things like pulling up her own pants can take a half-hour. She has had 15 surgeries and numerous hospitalizations because of infections," says Julie. "But our family has learned to appreciate the small things in life more. She has been a blessing to our family."

"I encourage other women to take 400 micrograms of folic acid if you are able to get pregnant, even if you are not planning a pregnancy. Studies have shown that it can help prevent spina bifida in many cases," said Julie. "If you've already had a child with a neural tube defect, it is recommended you take 4,000 micrograms of folic acid. That's what I did, and my next two children were not born with spina bifida."