The bright-eyed third grader keeps a straight face as he executes the complicated martial arts formations down the length of the crowded training room. His kicks aren’t as high as the others and he’s a bit on the thin side, but still he looks like a healthy, normal 10-year-old. No one would believe that this young boy who plays with LEGOS and likes to build science models was born with a genetic disorder that weakens his muscles and one day could take away his ability to run, walk or even stand.
Mark Taylor is the child of TJC math professor Shawn Taylor and was born with Muscular Dystrophy.
“He really loves building things with his LEGOS, creating different kind of, you know, Star Wars spaceship type things,” Taylor said. “We’ve got some chickens out on our place where we live, a garden… lots of fruit trees you know he enjoys messing around outside with the chickens and the garden, playing with his little dog. He’s just a typical boy. Interested in how things work and building stuff.”
Mark has Congenital Muscular Dystrophy (MDA). According to mdausa.org, CMD involves generalized muscle weakness with possible joint stiffness or looseness. Depending on the type, CMD may involve spinal curvature, respiratory insufficiency, mental retardation, learning disabilities, eye defects or seizures.
“He’s had this physical weakness all of his life so he’s, you know, used to it,” Taylor said. “He still gets frustrated at times you know because of the lack of strength that he has compared to his older and younger sister, but Mark’s type of muscular dystrophy is not completely immobilized him.”
Mark, along with his father and two sisters, take martial arts classes weekly At Apple Fitness Center.
“He’s really enjoyed that and has excelled well in that,” Taylor said. “It’s been a good thing for all of us to do as a family. He’s so flexible because of the muscular dystrophy that his form is actually better than a lot of people’s forms because, you know, we can get so stiff sometimes and he’s kind of more noodle-ish, kind of limp, so it makes his form a lot more smooth and fluid like it’s supposed to be.”
The Muscular Dystrophy Association of Tyler, along with help from the East Texas community, including TJC Apache Chiefs, is raising money to help Mark and children like him go to annual summer camp for kids.
“They basically try to make it as much of a normal time for them as possible. It’s really fun,” Taylor said. “We don’t have anyone in our family that has muscular dystrophy… there’s no one in our family for him to associate with that got the challenges that he faces so he got to meet a lot of boys from East Texas area that suffered with this.”
Camp John Marc is a week-long camp in Meridian, Texas and is the camp facility that is used for the MDA children in the East Texas area. Every child that is registered with MDA from the ages of 6-17 are allowed to go to camp free of charge. We have close to 18 children that go from East Texas.
“For a week these children participate in different activities including swimming, horseback riding, zip line, archery, sports, dances, ect,” Fundraiser Coordinator of the East Texas chapter of MDA Candace Pate said. “This camp is known as “a week in heaven” for the children that attend.”
Camp John Marc is a camp specialized for children with disabilities and the entire camp is wheelchair accessible.
“Mark went last summer, it was his first time,” Taylor said. “His therapist that was assigned to him took a little journal and she wrote down everyday what they did and basically it was a memory book for him, and he was given that at the end of the week and they do lots of arts and craft, and as much physical fun things as they can.”
MDA is a non-profit agency dedicated to finding a cure the muscular dystrophy, ALS, and other related diseases.
“MDA’s ultimate goal is to find a cure for each 43 neuromuscular disease we cover,” Pate said. “Along with research our goal is to provide comprehensive healthcare to our families.”
MDA accepts children and adults if they are diagnosed with some form of neuromuscular disease.
“MDA does not turn any family away due to their insurance or income status,” Pate said. “Once someone is referred to a MDA neurologist and have a diagnosis they are registered in the MDA system.”
Anyone is allowed to volunteer with MDA. Volunteers are always accepted for the fundraising events, help in the office, Telethon, and Summer Camp.
“It’s a huge blessing,” Taylor said. “Without community support and help there wouldn’t be as much funds available to pay for the food and the lodging and the utilities and everything that goes into having a fun camp for these kids.”
