Turning tragedy into triumph
Published: Thursday, November 28, 2013 at 5:59 p.m.
Last Modified: Thursday, November 28, 2013 at 5:59 p.m.
Luke Adams fidgeted at Ruby Tuesday on Wednesday afternoon like any other 7-year-old who would probably ordinarily pass unobserved: With his right hand, he poured sugar packets, one after another, into his unsweetened tea, and with his left, he stirred the tea furiously with a straw.
But Luke, his mother, Kim, explained, has the motor skills of a recovering stroke patient, so while fixing his tea is now normal, it used to be a feat.
Once paralyzed from the neck down because of a virus he contracted as an infant, Luke has had to relearn how to use nearly every muscle in his body.
His mother established a nonprofit called “Luke’s Way: Recovery in Motion,” and football fans at Saturday’s Gators football game against Florida State will have a chance to learn more about it through WKTK radio announcements throughout the game.
Kim Adams so far has raised about $18,000 since the nonprofit started in June — mainly through donations and fundraisers throughout Alachua, Suwannee, Lafayette and surrounding counties.
“For me, it’s about taking a tragedy and turning it into a triumph for others,” she said.
Now her goal is to raise enough money, possibly partnering with a health care organization, to establish a neurorecovery center that focuses on locomotor training, the type of therapy that Adams said has gotten her son literally back on his feet.
People with other neuromuscular disorders such as spina bifida and cerebral palsy could also benefit from the therapy, she said.
The nonprofit is currently partnered with Gainesville-based “Kids on the Move,” a pediatric physical therapy clinic.
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Luke Adams’ condition started out like any run-of-the-mill case of colic or a cold. At 5 months old, he had a fever and cried for hours. But when his legs stiffened and he had a glassy stare, his mother, a nurse, knew that something more serious was wrong. She rushed him to North Florida Regional Medical Center, and doctors there sent him to UF Health Shands Hospital.
After much waiting, tests and consultation with various physicians, Luke was diagnosed with transverse myelitis, a neurological condition caused by inflammation in the spine that disrupts communication between the spinal cord nerves and the rest of the body. It often leaves people paralyzed.
“It’s not very common, but we have had a handful of patients (with it),” said Dr. Stephen Beebe, a pediatrician at NFRMC and Luke’s doctor.
In Luke’s case, the cause was a little known virus, but sometimes viruses such as chickenpox can cause the condition, Beebe said. He added that there’s no genetic predisposition to it, so no real way to predict in whom it will strike.
It’s also very rare, striking about one in 50,000 people, Beebe said. “It’s very unusual. … It would be like worrying about getting hit by lightning.”
When Luke was first diagnosed, doctors didn’t think he would walk, but he’s turned that prognosis on its head.
“He’s made some real progress in trying to work through that inflammatory process,” Beebe said. “It was a very very long process, and his mom has been a wonderful caregiver. She’s really a pretty savvy mom. … She’s been his squeaky wheel.”
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As a nurse, Kim Adams said she’s known how to care for her son. And with a healthy dose of tough love, she said that she has also pushed him to recover part of his neurologically mediated muscle memory.
The locomotor training that Luke has done is the same thing actor Christopher Reeves, paralyzed from a horse accident, did in order to come off a ventilator and breathe on his own. It focuses on repetitive exercises to reactivate the neuromuscular system.
“When (Luke) started, he couldn’t write with a pencil or cut with scissors,” his mother said.
But after 43 therapy sessions, when Luke finally took his first two steps — the hardest of his life, his mother said — he was determined to keep going.
Today he walks with a rolling walker and is able to attend public school, where an aide helps him with transitional activities like getting to the restroom.
“Without (locomotor training) he would not be where he is today,” Kim Adams said.
For more information on Luke’s Way or to donate, visit www.lukesway.org/donate.
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