My daughter has a rare mitochondrial disorder called Leighs Disease. As a result, she has quite a few special needs, and it increases. She was healthy up until Feb of this year. Long story short, we spent 6 weeks at Riley Childrens Hospital and didn't know why she had the seizure that caused it. In June, we found out the culprit. Since then she has stopped smiling, talking, playing, walking, and we are scheduled for surgery to place a Gtube because now she can no longer eat safely. We now have to call in an in home nurse. She also has therapy. A physical, developmental, occupational, and speech therapist come once a week each.
at 6:22 AM on Dec. 26, 2010