Katherine - posted on 04/08/2012 ( 4 moms have responded )
My son is 6. Last school year he played fall soccer on the 4/5 year old team, basketball during the winter, and back to soccer in the spring. The season ended in May and by July we were seeing every doctor we could think of to try and find out what was wrong. He quit running, he quit using his arms and hands. He couldn't walk with out someone holding his hands. By August he was in a wheelchair. In October he was diagnosed with late onset mitochondrial disease. In December 2011 he was clinically diagnosed with late onset Leighs disease. We were given a prognosis of 2-20 years for our child to live and told that there is no cure. I can't sleep at night because I can't stop crying. I don't like to cry in front of him. I'm tired of hearing just take it one day at a time. I want to make everything better for him and I can't.