Dreama Whitlock: MDA helps family with struggles of stricken child
Who hasn't heard of the Muscular Dystrophy Association? The MDA has been a major ally in the fight against muscular dystrophy (MD) since 1950.
In the year 2000, I participated in a "lock up" event for MDA. I raised monies, sure, I enjoyed myself and the people were very kind at the event, but when the job was done I went on with my life. I was like all the others in the world of untouched by MD and on a need-to-know basis with the MDA. I never thought for a moment that I would one day write this as a part of West Virginia's diagnosed families of the MDA.
On Aug. 9, 2006, a little boy named Riley was born and would forever steal my heart. Riley is my grandson, second born of five that God has blessed our family with.
When Riley started to grow and learn to crawl, we noticed that he didn't get up on his hands/knees; he scooted with his right leg tucked beneath him. He didn't walk until he was around 17 months old. As he continued to grow and obtain his walking abilities, we noticed that he had a "waddling" gait. When he needed to get up off the floor, he would use his head to push himself up and then his hands to walk himself into a standing position.
We now know that is medically known as the Gower's Sign. We noticed other key elements as well, but had no idea that everything we were seeing was all an indication of MD.
The first five years of his little life we were told that he was having "growing pains" and would simply grow out of it. My daughter Ashley took him to a bone specialist because Riley said his bones hurt; they found nothing. Last fall, they changed pediatricians, the doctor spent extensive time with Riley and then told his parents that he believed that Riley had a mild case of cerebral palsy or Duchenne muscular dystrophy (DMD). He further stated that he strongly believed that it was DMD. A creatine phosphokinase test was performed and confirmed MD; later the DNA genetic testing would confirm Duchenne.
Duchenne muscular dystrophy is the most severe of all forms of muscular dystrophy and primarily affects males. Females are generally carriers of the defective gene. In DMD, the body lacks the ability to make dystrophin, which is needed to regenerate muscles and gain strength. It affects approximately 1 out of 3,500 males born each year, approximately 20,000 worldwide. Those afflicted typically are in wheelchairs by the age of 12 and lose many of the abilities that each of us take for granted, such as feeding oneself. They will eventually require full-time breathing assistance by their late teens and most live into their early 20s. There is no cure. There are treatments such as steroids, but these only slow down the progression. They do not stop the effects of the disease.
As you can see muscular dystrophy goes far beyond a simple definition, and the MDA is no different. Our doctors and medical professionals help us to understand the dos and don'ts of caring for a loved one afflicted with any form of MD. However, the MDA teaches us "how to live and celebrate life" with MD. The MDA not only means funding for research, telethons, muscle walks, etc.; it also means hope, love, and unity. It's a connection, a family, and a shoulder to lean on.
MDA offers our children and grandchildren a chance at a normal life, a place to connect with other children that share their struggles and triumphs. MDA gives our families encouragement and guidance every step of the way on the muscular dystrophy highway, so to speak. It provides common grounds for the children such as camp, which teaches the children that they too can do anything: ride a horse, swim, dance, sing, or obtain a victory in a race. I want my grandson Riley to experience a victory in a race, and the MDA provides him that chance.
Our local MDA chapter provided our family the chance to connect with others. It has helped with loaning Riley a medical stroller through the MDA loaner closet, and they are always a phone call away. As I said before, MDA teaches us how to live with MD but more than that they offer hope and a chance for a future.
If you would like to learn more, please visit MDA.org. If you would like to volunteer for our local MDA chapter in Charleston, please call 304-344-9807. Like the MDA page on Facebook to get updates on research, clinical trials or upcoming local events.
I humbly ask that you keep Riley and our family in your prayers. We are doing all we can to create awareness and will continue until the day all are cured! Please like our page on Facebook: https://www.facebook.com/Rileys.World.DMD.
Dreama Whitlock is a Huntington resident.