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Published: May 19, 2009 03:52 PM
Modified: May 19, 2009 04:16 PM

Walking tall with spina bifida
Apex boy now educates others.
John Allen Atkins
 
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Fundraiser:
The Run, Walk & Roll event will be held Saturday, May 30, from 8:30 a.m. to 12:30 p.m. The event includes a 1-mile walk on a fully accessible route, a noncertified 5K run on a paved course, and a Resource Fair with helpful information for children with special needs and their families.
Proceeds will benefit the programs of Dr. Joshua Alexander, director of the Pediatric Rehabilitation Program within the UNC Department of Physical Medicine & Rehabilitation. For information or registration visit telability.org.

Support Group:
A local Spina bifida support group meets every other month in Raleigh. For information e-mail nmiller@raleighneurology.com or call Nazaly Miller at 420-1682.

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When John Allen Atkins entered the fourth grade at a new school last fall, he did a pretty brave thing.

He told his teacher at Swift Creek Elementary that he wanted to talk to the class about spina bifida, the condition he was born with. “I told them basically what I had, what it is and how I got it,” said the bright-eyed 10-year-old.

Eventually, he ended up speaking to all the fourth-grade classes at school.

Spina bifida is a birth defect that involves the incomplete covering of the spinal chord and, or its coverings. It occurs in early pregnancy.

Unlike many other children born with spina bifida who are wheelchair-bound, John Allen’s disability isn’t as easily spotted. He no longer even wears leg braces. He plays sports. He’s a huge Hurricanes fan, and last summer he even made his own money selling lemonade to buy game tickets.

“He’s a very outgoing, courageous child,” said his mother, Kathy Atkins.

The Atkins family of Cary and many others are taking part in the first Run, Walk & Roll to benefit the programs and patients of Dr. Joshua Alexander, who treats John Allen and other children with special needs. The event takes place Saturday, May 30, from 8:30 a.m. to 12:30 p.m at Crowder District Park in Apex.

Alexander is director of the Pediatric Rehabilitation Program within the UNC Department of Physical Medicine & Rehabilitation. He is also director of TelAbility, a program he developed that pairs Internet technology with the collaborative efforts of doctors, therapists, service providers and parents of children with disabilities.

Alexander has coordinated John Allen’s care since he was a baby.

“John Allen has wonderful and very caring parents who have maintained their optimism for his future while taking extra steps — like investigating new treatments and opportunities — to ensure he can succeed in life,” Alexander said. “They are model parents for a child with spina bifida, a condition that can pose multiple physical, cognitive and other challenges.”

Alexander’s programs treat children with other types of disabilities including cerebral palsy and muscular dystrophy.

John Allen may not remember what his first years were like having been born with spina bifida. His mother does, though.

Kathy learned about the defect while she was pregnant and calls the family’s journey “a humbling experience.”

“It’s a wait-and-see game. Will he walk? Will he have neurological issues?” Kathy said.

John Allen was fortunate in that the hole on his spinal chord was low, where there is less chance of affecting movement in the legs. He had surgery when he was one day old and more throughout his young life. His walking was delayed, and he wore braces the first couple years.

Now, he walks without braces or crutches. He really took to sports. He plays basketball and machine-pitch softball, and he also loves golf. Kathy says her son is OK with not being the fastest or the strongest out on the playing field.

Kathy said she and her husband Tom made a conscious decision early on to not treat John Allen differently from their other two children, if at all possible.

“To watch him really brings strength to us ... We realize he’s OK. He loves life, he loves being around people and he’s OK with things.”

The Atkinses have a team of about 17 strong who will meet at Crowder District Park for the Run, Walk & Roll.

The family sees it as a way to give back for all the wonderful treatment they’ve received. It’s also a way for them to help raise awareness about spina bifida and other childhood disabilities.

Information from UNC Department of Physical Medicine & Rehabilitation was used in this story.
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