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Kim Taylor calls her son Forrest Gump, because “he just won’t stop running” – and doctors once told her he would never walk unassisted.
Born 10 weeks early, Matthew Taylor was just six months old when his parents noticed he wasn’t using his right hand. He was diagnosed as right-side hemiplegic, and soon after with cerebral palsy.
“I think I grieved for probably 24 hours for the child that I thought I had, versus what I had. Then we started therapy immediately,” Taylor said.
The Centers for Disease Control and Prevention estimates that an average of one in 303 U.S. children have cerebral palsy.
Matthew began physical, occupational and speech therapy five days a week at Wolfson’s Children’s Hospital in Jacksonville, Fla. It was there they were told that it was unlikely that Matthew would ever walk without the assistance of a walker – but at 21 months old, he took his first step.
“When he took his first step it was actually in the gym at therapy, and the therapist went and got one of the doctors to be checked out, and they all just stood there with their mouths open,” Taylor said. “There has been no stopping him since.”
Matthew’s journey from that day has been full of obstacles. Besides therapy, Matthew had regular Botox injections into his muscles to reduce spasticity and underwent a femoral derotational osteotomy in which surgeons cut his femur below the hip joint to turn it in the correct direction. Matthew’s hamstring was also lengthened in an additional effort to improve his ability to walk.
But Matthew took it all in stride and never complained, Taylor said.
Things took a turn for the worse when he hit a growth spurt at 14 years old. His body had developed a tolerance to the Botox injections, nearly paralyzing his legs. That’s when doctors introduced Matthew and his family to the idea of the SynchroMed II Programmable Pump by Medtronic.
The pump is about the size of a tuna can and is implanted under the skin of the abdomen to deliver Baclofen, a muscle relaxer, directly into the spine. Dr. Louise Spierre, pediatric physiatrist at the University of Florida, has treated Matthew for two years, and said it was a great solution for him.
“By reducing that spasticity for children with cerebral palsy, it allows the muscles to relax, to be stretched, and often you get improvements in terms of growth and growing more normally,” Spierre said. “You get fewer deformities across the joints.”
The amount of Baclofen administered can be easily adjusted, and the pump is typically refilled every three to six months.
After a short trial with the medication, Matthew told doctors he wanted the pump immediately, as he thought it could really make a difference in his life.
It turned out he was absolutely right.
‘The Beginning of Forrest Gump”
The pivotal moment came last April when he noticed he could turn on the TV with his right hand. Immediately his speech improved. He could bend and twist and became more active.
By August, he joined the school’s cross-country team.
Matthew and his family felt anxious about this: Would he have any endurance? Would he injure himself?
Not only was Matthew able to finish a race, he amazed his family and coaches by keeping up. His teammates showed their support by coming from the sidelines and finishing with him.
“And that was the beginning of Forest Gump,” Taylor said. “He has not stopped. He ran the entire season, and he never quit.”
In addition to running with the cross-country team, he started running regularly in community runs, charity runs, summer camps and 15Ks.
Matthew has also been doing some motivational speaking, and he recently began fundraising for Wolfson’s Children’s Hospital, and has made it his life goal.
“It’s great because I raise money for a lot of charities, and I just want to help other kids and give them a chance to have the life that I have,” Matthew said. “My doctors are like family to me. They treat me like one of their kids, and I’m just blessed to have them.”
Matthew is on track to run his first marathon when he turns 18, and in the meantime, he has permission from his doctors to run a half marathon. Spierre said he is a perfect model of what other patients can strive to achieve with the Baclofen pump.
“Matthew really had a spectacular result, partially because he’s such a strong person and works so intensely with therapy and has such wonderful family support and community support,” Spierre said.
Click here to learn more about the SynchroMed II Programmable Pump.