Child making tour to Texas Harley Davidson shops stops in Tyler
TYLER, Texas (KLTV) - 8-year-old Gaven was just 5 when he was diagnosed with the Duchenne muscular disease, however, despite the circumstances, with courage and a radiating smile he’s taken it upon himself to become the first boy with DMD to travel all across the state and visit every Harley Davidson store in Texas.
With the help of bikers from Mile Monsters Inc., together they are raising money to help kids with similar conditions. Gaven’s mom, Jessica Quirarte, said it’s helped their family in more ways than one. She expressed that she hopes that by raising awareness, studies to treat this condition will get more funding.
The disease usually starts in young kids from ages 4 to 7. It’s a genetic disorder that affects muscles, resulting in the weakening of the individual’s movement and motion.
However, this summer the FDA approved the use of a new process referred to as first gene therapy which could slow down and possibly even reverse the effects of the disease.
Dr. David S. Criswell, Professor and Chair Department of Kinesiology, says the main idea of this process is to replace the defective gene in kids with one that’s not defective. The treatment is available for children ages 4 to 5 in the form of injections. Gaven sits outside the qualifying age range, however his family is still hopeful that with more studies, an option for him will soon be available.
You can follow Gaven’s journey and even help out by visiting the Mile Monsters Inc. social media pages or their website at milemonstersinc.com.
As for the treatment, Dr. Criswell says if you believe your child may meet the qualifications for the first gene therapy, you can talk to your doctor and see options for beginning treatment.
To find out more about the work the Mile Monsters are doing, and to support Gaven and kids like him, click here.
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