Meet The Co-Captains

This is Adam John. He’s 7 years old. He is a feisty, strong willed and determined boy with big beautiful brown eyes and blonde hair. He just also happens to have Spina Bifida. Adam’s form of Spina Bifida is called myelomeningocele in which the spinal cord and nerves develop outside of the body and are contained in a fluid-filled sac that is visible outside of the back area.

To provide Adam with the best odds in his favor, we flew up to Philadelphia and underwent fetal surgery at Children’s Hospital of Philadelphia at the 26th week of his gestation to close his spinal cord opening. He was later delivered via C-section at 37 weeks gestation on October 18, 2011. From day one, Adam has defied expectations and the norms for a child with his lesion location.

Lots of determination, excellent medical care & therapies and the best orthotics had a lot to do with his milestone achievements. With the help of many other Spina Bifida parents and internet research, Adam’s orthotics have helped him achieve so much over the years. Adam has weakness/paralysis from his ankles down and his left hip dislocates but he doesn’t let it stop him. He wears a pelvic splint at night to keep his hip in place. He wears Sure Step brand SMOs to support his ankles and has Allard Kiddie Gait to support him when he walks independently.

Back in 2011 when we received the Spina Bifida diagnosis, I WISH that there had been a SB family there to tell me IT WILL BE OKAY! YOUR BABY WILL BE AMAZING! So now I work so hard to connect with newly diagnosed families and have them meet my son & others in our community. We hope that with working with the Get Back UP TODAY! Team that we can raise more awareness to all the orthotic help that can provide mobility for people with Spina Bifida.

Adam is your typical energetic, smart, social and outgoing first grader… he just happens to do things sometimes a little differently but he always finds a way to do it! Spina Bifida is only a small portion of his story.