Spina Bifida Support Group inspires confidence in kids with spina bifida and their parents

By Deserae Dorton | [email protected]

Every few months a group of people of all ages and all walks of life from the Intermountain West gather in Salt Lake Valley. Their commonality? Spina bifida, a rare birth defect in which the spinal cord and its coverings (meninges) are exposed through a gap in the backbone. As children with this condition grow, typically their mobility is affected and many are in a wheelchair for the rest of their life. The Intermountain Spina Bifida Support Group allows for families affected by spina bifida to be there for each other. 

Recently, the group gathered at Fairmont Park for a summer pizza and swim party. 

Ashley Pederson took over as the group’s organizer four years ago. Her daughter, Penny, 4, has spina bifida. It was important to Pederson to ensure the group continued to meet because she highly values community. “It’s especially important with a special needs community,” Pederson said. “It’s wonderful to be able to get to know one another and for our kids to see other people just like them. It is really empowering for our kids, and it’s empowering for the parents, too.” 

In addition to spina bifida families in attendance, there were organizations present as a resource for families. Utah Adaptive Alliance helps connect people with disabilities with opportunities in their community and has the long-term goal of building a facility with adaptive playgrounds, locker rooms and providing a space for people with disabilities to be fully involved. Medical supply companies, Hollister and Byram Healthcare were also in attendance, to educate parents about access to products which a hospital will not typically have. 

Kristi Cook, the parent of 4-year-old Whitney, appreciated that coming to the group means she gets to see adults with spina bifida, knowing they’ve gone through what her daughter will experience in the future. “I love that I get to see that they are successful. When you’re the parent, you have this little baby and you don’t know what their life holds. We met Troy when Whitney was 6 weeks old, and were like, OK, this can be great. He is this great man.”

Pederson is referring to Troy Ogden, 32, who has been coming to the support group for years. Ogden feels strongly about empowering children with spina bifida to feel like they are capable of living a full life. 

“My biggest emphasis being here is to make sure parents know that their child [with spina bifida] can be an adult and can have a normal life if you treat them like your other children,” Ogden said. When serving a mission for The Church of Jesus Christ of Latter-day Saints, Ogden had three companions with spina bifida and saw a stark contrast in how they interacted with the world. “They were so limited in their mindset,” Ogden said. “Not because of spina bifida but because of how they were raised. So, that’s the biggest reason I’m here. To make sure the parents know you can have a normal life.”  

Ogden recalled meeting a young man, JP from Wyoming through the spina bifida community. JP was in middle school and had never met anyone with a disability and was used to being the only one. When the two of them met, Ogden saw a light bulb turn on with JP.  “I saw him be like, ‘Oh! I can be OK too!’ And now he has a spot on his college radio station and is going into broadcasting.”

Parents and those with spina bifida in attendance agreed, seeing people who are like you do great things suddenly makes it feel like anything is possible. 

Pederson said even seeing kids with spina bifida who are teenagers is incredibly helpful. “You get to see people at every phase of life,” Pederson said, “it’s just fun to see how people do great. Being a part of a community is, I think is really, really important. Because it can be really isolating having special needs kids.”