JASPER'S JOURNEY: Therapy in Louisville giving London family hope
LOUISVILLE, Ky. (WDRB) -- He wasn't even 2 years old when doctors in England told his parents their son would never walk again.
But there's a new hope and a new road ahead, thanks to therapy being offered right here in Louisville.
Jasper Thornton-Jones was a perfectly-healthy child until he picked up a viral infection at a Halloween party in 2014. It attacked his heart, but he couldn’t tell his parents because he was so little.
After showing signs of progress, his illness resurfaced in December. Doctors in London realized the toddler's heart was beating twice as fast as normal.
"Whilst they were looking at him, he had a massive heart attack," said Jasper’s father, Felix Thornton-Jones.
The 20-month-old was not expected to live through the night. While wired up and tied to tubes, Jasper had a spinal stroke.
"He was moving a bit, but we realized he wasn't moving his legs," said Jasper’s mother, Katharine Collins Thornton-Jones.
Jasper spent the next several weeks in ICU before doctors transferred him to a spinal cord injury hospital outside of London.
"He could pull his legs up, but he couldn't do anything else," Katharine Collins Thornton-Jones said. "He couldn't push his legs away from him. He could move around on the floor by pulling himself with his arms."
Felix and Katharine were ready for a life of wheelchairs and braces. Doctors told them their son would never walk again, and that was unacceptable to them.
Katharine went online and discovered Locomotor Therapy. It was not offered for children in the United Kingdom, but it was in Louisville at Frazier Rehab, a part of Kentucky One Health.
"We came here thinking well, if nothing else, at least we know we've left no stone unturned," Felix Thornthon-Jones said.
Jasper’s journey begins in Louisville
Since June, Jasper has been re-learning how to use his legs. Suspended in a harness and 4,000 miles from home, his therapists guide his every move.
The intense practice of stepping on the treadmill sends information to Jasper's spinal cord, signaling his leg and torso muscles to turn on.
"We never leap. We never go from here to here, it doesn't happen. That would be a miracle," Dr. Andrea Berhman said. "This is science and it goes in these small steps like this forward."
Behrman is the executive director for University of Louisville's Kosair Charities Center for Pediatric NeuroRecovery. She leads the research program for children with severe neurologic injuries.
"Prior to this therapy we're using, our understanding was that that damage was permanent," Dr. Behrman said.
But now there’s a new understanding and an expectation that children should get better.
"We're taking advantage of a complex spinal cord that can make decisions,” Dr. Behrman said. “It can respond to sensory input, just like your brain. Your brain listens. It responds to the environment, makes decisions ... your spinal cord doesn't have a will though."
Therapists guide Jasper’s legs on the treadmill
The therapy that Jasper’s going through is re-training his nervous system below his injury, basically turning it back on, trying to get him moving, standing and walking on his own.
"I'm able to tailor my intervention toward those goals," said Jasper’s therapist, MacKenzie Roberts.
For the past several months, Roberts has worked with him for nearly two hours a day, five days a week, loosening up his hips and helping him stand up straight.
"In the beginning, we really wanted to get his feet on the treadmill … so keeping his feet down and really working on getting his knees straight and tolerating even just standing and being in this position," Roberts said.
Teaching a 2-year-old takes patience, repetition and lots of creativity. Therapists use music while moving Jasper's muscles, making sure his body stays in alignment.
Since he's a toddler, toys are also a big help.
"I'm figuring out, you know, bunnies are jumping or something's happening all around the treatment session that's mimicking what I want it to do, and he's doing what the animals are doing. Or ... being imaginative and letting his imagination flow - that lets the therapy session go," Roberts said.
It doesn't even seem like therapy, but when it works, you can see it in Jasper's face.
"He does this little sort of internal smile, like he doesn't really want anyone to see it," Felix Thornton-Jones said. "But he knows that something's happening."
Jasper heads to the hallway with a walker
After about an hour on the treadmill, it’s time to get out the walker. Therapists go up and down the halls guiding his fragile feet, helping him take little steps.
They stop to strengthen his upper body, helping him stand and reach while playing. While WDRB was there, Jasper got out a small toy microwave.
Therapists were putting what they've learned on the treadmill into practice outside the lab and right in front of Jasper’s mom.
Eventually, it's time to sit down so Jasper can work on standing back up.
After his physical therapy, Jasper comes down to the sixth floor for experimental electrical stimulation. But because of privacy laws and the fact that he's involved in a research study, video recording is not allowed.
"So we've been looking at studying his muscle activity by recording EMG (Electromyographic Signals), or information to his muscles to see if they're turning on. We did this with all of his muscles,” Dr. Behrman said. “It looks like, in his lower leg, they're not turning on yet."
Dr. Behrman and her staff are trying to figure out what muscles are newly activated and how to advance recovery in the ones not yet turned on.
“But that's what we're providing to every parent - is really a path of hope - and we believe that path is built on science, and that it shows the possibility for the nervous system, and that it's very smart," she said.
Dr. Behrman says one of the best parts about doing this therapy in a clinical location, Frazier Rehab, is that what they learn can then be moved to patient care quickly.
"Our aim is to translate science, our findings, rapidly into practice,” she said. “So many places you're going to publish, put it on a shelf, talk about it ... We're gonna do it."
Doctors dedicated to pediatrics, a university supporting their cause, and a community donating millions to research shows a full-team effort inspiring Dr. Behrman and fueling her passion one step at a time.
"I mean, really, you're giving a child their childhood," she said.
Positive benefits of Jasper’s therapy
Jasper’s therapy is working. He’s now able to ride a bike when just six months ago he couldn't.
The therapy has also helped him regain control of his bowel and bladder, and crawl like a normal child with his legs not tucked under him.
It’s all a miracle to his parents, who were told their son would never walk again.
"You're given hope to come here, because everyone else is saying nothing can be done for him," Katharine Collins Thornton-Jones said. "And to have that hope turn into real progress for him ... that's really going to change his life."
From a heart attack to hope, a little boy from London is defying the odds in Louisville.
"I can't even put that into words,” Roberts said. “It's just a sense of like ... it gives me goosebumps, is the best way to put it. There are days when I just go into my office and I'm like 'this is why I'm here.'
"It's incredible. You know you're making a difference."
There's no set timeline for Jasper's therapy as he continues to improve, but his family will be here at least through the end of the year.
To learn more about the U of L's research and therapy at Frazier Rehab, click here.
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