The fight to walk
Sue Guinn Legg
Apr 2, 2012 at 11:40 AM
Daniel Leonard is doing all he can to walk again, and after a recent course of stem cell treatment he’s as close as he has been since a few months after the 2005 injury that put him a wheelchair.
He was 22 years old and about to begin his third year of college when he woke up one August morning on the floor at his family’s Johnson City home unable to move and struggling to breathe.
While the cause of his injury remains a mystery, what is known is that three vertebrae near the top of his spine had been crushed, leaving him paralyzed from the neck down, on a ventilator and not expected to never walk or even breathe on his own again.
Six months after undergoing surgery to remove the bone fragments from his spinal cord, Leonard, who had played several sports in high school and was boxing at the Johnson City Athletic club prior to his injury, was exceeding all expectations.
In treatment at the Patricia Neal Rehabilitation Center in Knoxville, he was not only breathing independently, he was pulling himself up on parallel bars and being fitted with leg braces to help him take his first steps.
Then the unthinkable happed, again. Because there had been nothing done to stabilize his damaged vertebrae, his spine collapsed at the site of his injury and all of his progress was lost.
“I worked my butt off to get to the point I was about to start walking,” he said. But the gains he had made in upper body strength were erased and there was no longer any movement in his legs.
After a second surgery to fuse the bones, his condition was labeled as “incomplete paraplegia” characterized by limited movement and sensation in all the muscles below his neck and none at all in his legs. Doctors told his family he would never be able to move his legs, and for many years he could not.
For a while, he lived independently with the assistance of a caregiver. When his caregiver left, he moved to a nursing home, expecting to stay only long enough to find another place and another caregiver. But without money to finance that plan, months turned into years and the Four Oaks Health Care Center in Jonesborough became his home for the long term.
Early last year, things took a turn for the better when for reasons unknown he began to regain some movement in his legs. Encouraged, Leonard once again threw all his effort into physical therapy. In October, he began working out regularly with Amy Caperton, a personal trainer at the Tri-Cities Lifestyles fitness center in Johnson City, and coupled that with physical therapy at the new Mountain States Rehabilitation Center.
His family, who had long believed stem cell treatment would provide his best chance at recovery, stepped up their efforts to pay for the treatment.
His sister, Rachael Leonard, a business consultant who had been following the progress of stem cell research and exploring treatment options since a few days after Daniel was injured, zeroed in on The Stem Cell Institute, a reputable facility in Panama that concentrates on treatment of spinal cord injuries, muscular sclerosis, rheumatoid arthritis and heart disease.
His mother and siblings pooled their resources and came up with about half the $45,000 needed for the $35,000 cost of his first four-week course of treatment and travel expenses for Daniel, Rachel and their mother, Diane, to make the trip to Panama.
The balance was raised through a series of small benefits — dinners at area restaurants, a concert and an auction, and through many individual gifts and online contributions to Daniel’s fundraising page, www.giveforward.com/danielleonardstemcells.
“People we know around here and businesses were very generous and there was a lot of money raised,” his mother said.
To clear up any misconceptions about the treatment, the family emphasized to everyone interested that the stem cells used at the institute come from umbilical cords donated by new parents and the patients’ own bone marrow and referred them to www.cellmedicine.com for specifics.
“I’m not trying to tell people what to do with their own bodies, but for me, if it had been kill a baby to walk again, there’s no way I would have,” Daniel Leonard said.
The family finally made it to Panama in February. The treatment began with two weeks of daily cord blood cell injections into his spinal fluid and two hours of “intense interval” therapy that requires Leonard to work his muscles as hard as possible for one minute, rest for two minutes and repeat the process over the course of an hour.
“One hour is what they do, but with what I had been doing with Amy already, I thought I needed more,” he said.
The injections were painful and the workouts exhausting, so Leonard was relieved when Panama’s annual carnival week celebration gave him a week of rest before the treatment resumed with another two weeks of daily injections of cells drawn from his hip bones.
On the second day of his fourth week of treatment, Leonard experienced his first noticeable improvement when he flexed the right calf muscle he had not been able to move in years. The following day he felt himself contracting the pectoral muscles in his chest.
Day by day he’s regaining strength and there have been many small, but encouraging, gains that have also been obvious to caregivers. At Four Oaks, his aides are changing the way they handle things. While transferring Leonard from bed to a chair, it’s easier for them to raise him to his feet to pivot, which can now be done with one person’s assistance rather than two.
“These are all little things, but they are huge for us,” Leonard said.
Caperton, who with help from a client at Lifestyles spent a few days in Panama learning all she could from doctors and therapists at the institute, is equally encouraged.
“I am trying to be objective, but I must say he is making drastic improvements and it excites me,” she said.
The next six months before the stem cells die hold Leonard’s greatest opportunity for improvement, and continuing his physical training will play a critical role in the treatment’s effectiveness.
Optimum recovery will come with repeat treatments, and the fundraising for Leonard’s next trip to Panama is under way. There’s a three-on-three basketball tourney being planned at the Lifestyles center, and Leonard is searching for a local business to put up a prize worthy of the tournament’s entry fee.
He’s inviting everyone to follow his progress at his Facebook page, Daniel Leonard Search for a Cure (http://on.fb.me/H6sAtf). And for anyone who wishes to help, online donations may be made at www.giveforward.com/danielleonardstemcells.
Donations to the “Daniel Leonard Search for a Cure Fund” can also be made at any First Tennessee Bank location or by mail to First Tennessee Bank, 1500 W. State of Franklin Road, Johnson City, TN 37604.
“Hopefully, with the next treatment I’ll be able to stand,” he said. “I’m excited about it. I can’t wait to see the results.”
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