‘He should not be able to walk’: Lafayette boy defies odds, raises awareness for spina bifida

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Adam Luke, 7, of Lafayette (Photo: Andre Broussard/Special to the Advertiser)

LAFAYETTE, La. (Daily Advertiser)- Pebbles from a church playground go flying out of Adam Luke’s pockets as he pumps his legs to get a swing going. 

“On paper, he should not be able to walk,” his mom Kellie Luke said. “Because he has (no feeling) from the knees down. There’s nothing happening in the ankles. Toes don’t wiggle. Nothing’s happening.”

Adam has a form of spina bifida called myelomeningocele, which occurs when the fetus’ spinal cord and nerves develop in a fluid-filled sac outside of the body. Because of nerve damage, the 7-year-old has foot drop paralysis, an unnatural gait due to paralysis of the muscles in the foot and ankle.

Earlier this year, he was named the youngest co-captain of TeamUP, the first national organization that raises awareness for people who use leg braces due to foot paralysis.

Adam is the perfect candidate for TeamUP, according to his mom. The second-grader doesn’t shy away from anything and is “a little Energizer bunny.” She had to take a three-hour-long MRI at the Children’s Hospital of Philadelphia to get scans of Adam in utero where he wasn’t bouncing around and making the image blurry.

Kellie was 19 weeks pregnant and about to leave for a family vacation to Daytona, Florida, when Adam was diagnosed with spina bifida.

“My doctor didn’t make the diagnosis scary,” Kellie said. “She said, ‘He is perfectly healthy in there. He is a beautiful blessing from God. He was made just for your family’.” 

“I had a diagnosis?” Adam said as if hearing his mother say it for the first time.

“Yeah, remember I told you when we found out about your spina bifida?” she responded.

At 26 weeks, she had the fetal surgery at the Children’s Hospital of Philadelphia, which has been performing the operation since 1998. Kellie said the family understood that the surgery was not a cure but had the potential to save nerves in the legs, brain function and prevent cerebellum issues.

She stayed on the East Coast until she had her scheduled cesarean section at 37 weeks. Everyday she would tell Adam in her womb, “It is not your birthday. Your daddy is not here.”

When he was born, he became the first child in Lafayette to have the fetal surgery. In 2011, the operation wasn’t available in Louisiana, though Ochsner Medical Center in New Orleans would offer the surgery two years later.

TeamUP founder Beth Deloria saw Adam on Facebook for the first time when he tried on his first pair of Allard braces. The braces are made of a unique material, carbon fiber, or woven metal that offers a natural spring to the step.

“He was a kid again right away,” she said. “He was racing up and down the hall, saying ‘I could get used to these’ … I followed his Facebook page for a year before I asked his mom to have him join Get Back Up (the main TeamUP organization).”

For the full story visit here, at the Daily Advertiser.

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