You probably came to our site to order study materials, but first, if you will indulge me, I'd like to tell you about my family's personal journey with muscular dystrophy.
I don’t like to ask for help. Neither does my twelve year old son, Benjamin, who has muscular dystrophy. While he can’t run, jump or get up from the floor, he has the determination to do as much as he can by himself. What I’ve learned from Benjamin is that there are some things you just can’t do by yourself, that’s why I’m asking for your help.
Benjamin was born in the summer of 2006 and we couldn’t have been more excited to welcome him into our home. All of the sleepless nights and diaper changes were small inconveniences we gladly accepted as we adjusted to life with a newborn.
For the first 18 months, Benjamin developed just like most other children. We watched as Benjamin learned to smile, laugh, sit up, crawl and walk at the expected pace. We took as many pictures as we could (just like most first-time parents) and enjoyed every stage of his development. We couldn’t have been more excited about our child and were looking forward to all of the things we would be able to do together as a family in the years to come.
It wasn’t until just after Benjamin’s second birthday that we noticed something was wrong. He had trouble getting up from the floor and was falling a lot. We tried to dismiss it and assumed his balance and strength would improve as he got older. It wasn’t until two different pediatric nurses suggested we take him to a neurologist that we started to think his condition was not improving
The neurologist confirmed our deepest fear - Benjamin has muscular dystrophy. What the neurologist initially thought might be Duchenne turned out to be Spinal Muscular Atrophy (both types of muscular dystrophy). In an instant, the hope that Benjamin would have a normal childhood was gone.
Since that day we have learned a lot about the many forms of muscular dystrophy and about Spinal Muscular Atrophy (SMA). To put it simply, Benjamin lacks the ability to produce a specific protein his body needs in order to keep the communication flowing between his brain and his muscles. Children with Spinal Muscular Atrophy typically experience muscle atrophy because the signal from their brain does not make it to their muscles. It would be similar to the loss of movement one would experience from a spinal cord injury where they became a quadriplegic, except that SMA is a gradual loss of movement throughout the entire body over time, and those afflicted maintain feeling throughout their entire body.
We are grateful that Benjamin’s condition is mild compared to children with other, more severe forms of muscular dystrophy. Knowing the high medical costs we face, I cannot imagine the medical costs parents of children with more severe forms of muscular dystrophy endure just to keep these precious children alive for another day… hoping each day will bring them closer to a cure… and that their child will make it to see that day.
I’m willing to share Benjamin’s story with you because we need your help. Mometrix is sponsoring me to raise money for the Muscular Dystrophy Association (MDA) and will donate 10% of sales that come through my division this month to research.