"...a true Valentines Day gift from God"
John Dylan Cully's Web Site
Questions We're Asked
**What is CMD?
I explain it as a muscle disorder where they aren't as strong as other people's muscles, and their muscles fatigue and break down faster than an average person's would. The damage that is done through normal living never completely repairs itself and this is why it is a progressive disease.
**What is the treatment for CMD?
There is currently no cure for CMD, but there is always new research being done on it. The best course of action is to provide adequate nutrition, love and therapy to ensure the best opportunities to keep mobile, and happy.
**Is he OK?
I am often perplexed at this question. But collectively I think he is fine. He is above average in cognition and speech. He laughs, sings and plays all of the time. He occasionally throw a temper tantrum, though it is not as loud or violent as a typical toddlers tantrum! He is really healthy in that he doesn't get sick often and is a real trooper for the Dr.s.
**Will he walk?
We really don't know if he will be able to walk on his own, but trust that God has a plan for him and we will continue to help him to do his best at getting around no matter if he walk on his own or not.
**What is the tube on his face for?
I just explain that it is like a straw that goes down into his stomach, and since he doesn't eat enough to grow and feed his muscles, we give him a special formula like a milk shake at night to help him grow.
**Will you have any more children?
We are not currently planning any more children. After three wonderful children, we feel our home is pretty full. While there are the occasional day-dreams of a baby, we know the chances of having another child with CMD are 1 in 4...and those odds don't sound so appealing.
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