PN-G grad to be featured on MDA telethon

September 03, 2006 08:42 pm

— By Amy Moore
The News staff writer
Imagine being a high school graduate confined to a wheelchair and having control over only one thumb and your head. Imagine knowing that at one time in your life you could walk and run and feed yourself. Now imagine that the cure for your disease has not yet been discovered.
Jeremy Jimenez, of Port Arthur, does not have to imagine this scenario because he lives this everyday. At 4-years-old Jeremy’s parents brought him to Houston because, as a toddler, he was often falling and walked on his tip-toes. A muscle biopsy confirmed that Jeremy suffered from Duchenne muscular dystrophy, a disease profiled and named in 1986 — the same year Jeremy was born.
According to the Muscular Dystrophy Association’s web site, MDA.org, Duchenne muscular dystrophy is one of nine types of muscular dystrophy caused by an absence of dystrophin, a protein that helps keep muscle cells in tact. The disease is carried by women, but primarily affects boys, with an onset between the ages of two and six. Because Duchenne muscular dystrophy, or DMD, is carried through the X chromosome, mothers may not exhibit any symptoms, yet their sons will inherit the disease.
Jeremy’s muscle deterioration progressed slowly and for a while he could get around by crawling because he still had the use of his arms. However, by the time he was six, Jeremy’s motor development had decreased to the point that he needed a wheelchair to get around. He had lost the use of his legs and most of the mobility in his arms.
Jeremy was the first person in his family to show any kind of symptoms of DMD, but after he was diagnosed the women in his immediate family were tested to see if they carried the mutated X gene. None did.
Over the years, Jeremy continued to go to school and excelled in his classes. When he was 12, Jeremy had surgery to insert a rod into his back to counteract with his scoliosis, an effect of DMD. Before the rod held is body upright and kept him from slumping, Jeremy could feed himself because he hunched his back forward enough for his hand, with its limited mobility, to reach his mouth.
After the surgery, Jeremy could no longer complete this task that most take for granted, and became totally assisted in his daily activities.
Because DMD causes fixation in joints that can restrict flexibility, Jeremy had physical therapy to stretch his arms and legs. He wears braces on his legs and underwent heel cord surgery — a procedure which helped to keep his feet straight and flat. Jeremy said the surgery was necessary for when he walks again.
“I’ll walk again, I know I will” professes Jeremy without out a doubt. “I remember walking and falling a lot as a kid in Pre-K and kindergarten and I’ll do it again.”
This experience has strengthened his faith in God, as well as his family’s.
“I don’t know how people can make it through without faith,” said Jeremy’s grandmother, who he calls Mimi. “We’re just waiting for him to get up out of that chair.”
DMD only affects the voluntary muscles, not nerves or the brain, so Jeremy can still feel and think like everyone else. His intelligence is not effected. He thinks so well, in fact, that he graduated with honors from PN-G High School last year and received a scholarship to Lamar University. His senior year, Jeremy was voted Most Popular and at graduation ceremonies last May, Jeremy received a standing ovation from his classmates and the crowd of thousands.
“It felt good” he recalled.
An important effect of DMD is the problems it creates for the hearts of people who have it. Eventually the heart, being a muscle, weakens in an act called cardiomyopothy, which puts people at risk for fatal heart failure.
Thankfully Jeremy’s heart is doing well, although when he was 16 he did have some problems with it. To deter any problems, he takes six different pills a day, five of which are for his heart.
DMD also causes weak lungs and Jeremy has been in the hospital several times for pneumonia, although on the whole he is extremely healthy.
Jeremy didn’t, and still doesn’t, let his DMD get in his way of having fun and seeing the world. From 1993 to 2004 Jeremy attended MDA summer camp where he, and other kids living with muscular dystrophy, went swimming, horseback riding, canoeing, enjoyed dances and even competed in softball games against the fireman in the Brenham area, where the camp is held.
Jeremy has traveled to Chicago, California, Washington D.C., New Orleans, New York City, and evacuated last year to Memphis and then visited Little Rock.
In school Jeremy enjoyed singing in the choir, and now that’s he’s graduated, he still enjoys singing at home with his dad, Darren, and grandmother, Mimi.
“My daughter, Tonya, is the only one in the house who doesn’t sing,” said Mimi, who has devoted most, if not all, of her time to taking care of her grandson. “He’s my heart. We’re like this,” she added, crossing her fingers.
Jeremy’s mother, Tonya, works as a nurse at the Health Department, and in her spare time she researches to find out as much as she can about DMD, treatment and cures.
And a cure might not be far off. Jeremy said researchers believe they may be close to a cure through gene therapy using man-made genes to ‘fill in’ the lacking dystrophin in the muscles.
But close enough is not a cure. So Jeremy’s doing what he’s done every year for the past 16 years — work as a local ambassador for DMD and appear on the Jerry Lewis MDA telethon to help raise awareness and money for the Muscular Dystrophy Association.
Starting at 8 a.m. Sunday, Sept. 3, KFDM Channel 6 will host the telethon and at 3 p.m. Monday afternoon Jeremy will share his story on the program, encouraging people to donate.
“You just live with it,” said Jeremy, “but we pray all the time for everyone and everything.”
If you would like to donate to MDA research, call 1-800-FIGHT-MD.

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