love_me_some_reddit t1_iwjmbjg wrote

I hope so as well. I don't hold out much hope though. The best way I can help right now is to talk to parents of children with spina bifida. Help them prepare for their child getting older and what comes along with it. Man, I wish I could make that a job!

Take me for example. I played basketball with my friends growing up, I walked stairs, and I did most things everyone did. Albeit with a lot of challenges. As I aged my body was taken away from me. I was not prepared for that. So many others will not be as well. They need help understanding the progression. I wish I could reach them all, or get the ones I reach the ability to look beyond 10 years.


love_me_some_reddit t1_iwj2tns wrote

I have to live with my parents also. It's also been tough to work with all the surgeries I have to have, and the rules I have to follow to keep Medicaid.