EVENT DATE: Apr 10, 2016
Rebecca Green wrote -
When we first saw the symptoms, Tyler had just learned to walk pretty well and was almost to the point of running to keep up with other 2 year olds.
Fairly suddenly, over the course of about a month, he began to fall…a lot. His left ankle would turn in or he would lift his entire left leg up and arch his back while walking, only to fall again once his foot hit the ground.
Since that time, he has been diagnosed with Myoclonus Dystonia, a fairly rare, genetic movement disorder that involves involuntary muscle jerking or twitching of the arms, neck, and trunk. The myoclonus is triggered by the simple movement of the affected muscle, or as we see in Tyler a lot...when he’s tired, stressed or if there is a sudden noise. So that it is easier to understand…think about hiccups or when you are going to sleep and suddenly feel like you’re falling…it is that type of sensation in the body…but all of the time.
More than half of those with myoclonus also develop a neurological condition called dystonia, where incorrect signals between the brain and the muscles cause involuntary muscle activity such as twisting and pulling of specific body parts. The dystonia can affect a single part of the body, causing isolated problems such as a writer's cramp in the hand, or it may involve multiple areas of the body. For Tyler, the dystonia is seen in his left leg, but he often does often have very bad cramping of the feet and hands.
Although medicine to help him control the symptoms has not been promising thus far, what has been promising is the amazing work of the therapists at the Children's Therapy Center of the Quad Cities. Through weekly physical therapy, occupational therapy and aqua therapy appointments, Tyler continues to build his core muscle strength, while learning how to run without falling, and how to cope with the symptoms of the disorder. He wouldn't be where he is at today without all of their help!
On Sunday, April 10, 2016 WQAD will host the annual telethon for Children's Therapy. As one of the families asked to participate in this event, we are asking friends, family and our community to support this fantastic service to the children of our area. Please join us in recognizing the good people providing great service to children with disabilities.
Our goal is to raise $1,000 for this worthy cause and any contribution you are comfortable making is deeply appreciated.
Thank you for your consideration!
David, Rebecca, Faith and Tyler