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THE SEARCHFORANEWNORMAL MOMETRIX AND MUSCULAR DYSTROPHY RESEARCH
Muscular dystrophy is a condition that changes your perspective on “normal.” You watch your child run around, jump, and play, and then slowly that goes away. They no longer run and jump, and they begin to struggle to even walk. You get to that new normal. You grieve the loss of what once was, and as parents, you accept the situation and help your child be the best they can be. Then, as more time passes, you watch as your child loses his ability to walk. One day, he can only crawl. You grieve and then you accept. There’s always a new normal — but at the same time, there’s always a grieving process. The two seem to go hand-in-hand. Since August 2011, Mometrix Test Preparation has had something of a tradition. A portion of our sales — specifically those that come through my sales division — go to the Muscular Dystrophy Association and help fund further research into muscular dystrophy. Since we began, we’ve raised about $65,000. This is a cause that’s very close to my heart. My son, Benjamin, lives with muscular dystrophy. Since he was diagnosed, my wife and I have been on that journey to the new normal. But thanks to research into the condition, the exact circumstances of that new normal are rapidly changing for the better. I began working with Mometrix in 2009. In my early days with Mometrix, my son, who was a toddler at the time and had yet to be diagnosed with MD, was starting to show signs that something wasn’t quite right. His development was changing. Until that point, Benjamin had been growing up like any other kid. Benjamin’s changing development was noticed by pediatric nurses, who shared their concern with my wife. We took him to a neurologist, and after testing, we learned why Benjamin’s development had changed: He had spinal muscular atrophy (SMA), one of the many forms of MD. Benjamin’s brain had developed normally, as had his muscles. It was the connection between the two — the ability to communicate — that was deteriorating. He was changing from a healthy baby boy to a boy whose future was uncertain. At 2 1/2, Benjamin could walk and move around like any other child his age. By 8, his life had completely changed. He could no longer walk. His mobility had become limited.
In 2011, Mometrix came to me with a sponsorship opportunity. This eventually became our yearly tradition of giving back to the MDA. This was also when Jerry Lewis was still doing his MDA Labor Day Telethon, one of the biggest national events for MDA. As it happened, 2011 was Jerry Lewis’ last year of involvement before the event was reorganized. It was only a few years later, in 2015, that the telethon (which had become the “Show of Strength”) was canceled.
Jay and his son Benjamin
With the MDA fundraising landscape changing, 2011 was the perfect year to begin this program. I wanted to do something, and Mometrix provided a new platform to make a difference and help people just like my son. As I immersed myself in the world of MD research, I eventually learned of a drug that was undergoing clinical trials. I followed the development of this drug through FDA approval and public availability. When it did become available, I wanted it for my son, but we had to fight for it. It took months of communication with the hospital and the insurance company to get approval, but we were successful. On April 25, 2017, Benjamin received his first spinal injection. As of June 21, 2018, he’s had a total of seven injections and the results have spoken for themselves. During the clinical trials, it became clear that younger children responded better to this new treatment. Because Benjamin was 10 when he began the treatment, it hasn’t brought back much in the way of movement. What it did do, however, was stop the progress of the condition. This new drug changed things for our family. We found our new normal. There is no longer this constant grieving process as Benjamin’s life changes. The new normal has become just “normal.” We can tuck Benjamin in at night and go to bed knowing he isn’t going to get worse. That’s remarkable, and for that, I am thankful.
–Ja y Willi s
For more information about our August MDA campaign, please visit Mometrix.com/mda
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