Just looking for other people who have been diagnosed with this or whose children have been.
My daughter Chloe is almost 2 and was recently diagnosed with a collagen iv myopathy. There are two types of collagen iv myopathy's - Bethlem Myopathy / Ullrich Muscular Dystrophy. We still are not sure which one she has - even though most research suggest they are pretty much the same - Bethlem is just less severe.
Chloe cannot walk, sit from lying down, lift up her head while lying face down, bear weight on arms, can stand for short periods of time while leaning on something, cannot eat lumpy food etc etc etc!
Just after some people to talk to. I am coping better than the past but still find it hard to see other kids running around etc. Plus its genetic so other children we have have a very good chance of also having it (we are still finding out the exact odds). So I have pretty much resigned myself to the fact that she will be our only kid cause I can't go through it again and Chloe needs so much attention that its not fair to have another.
Anyway thats all I have to get off my chest for now
Cath
My son has Bethlem Myopathy
Just looking for other people who have been diagnosed with this or whose children have been.
Reply With Quote
Bookmarks