Help me cope

[Guest guest]

Hello, My name is and I have a seven yr. old boy for whom we

are testing for Mitochondrial Disease. He had a muscle biopsy in

January and I am patiently (okay not so patiently) waitng for the

results. Ever since I learned of this disease stuff I have seen a

lot of signs of Mitochondrial disease. We have been looking for a

real diagnoses for the last five years. He started out with a

metabolic disorder Ketotic Hypoglycemia, and has pretty much resolved

the hypoglycemia but still has few episodes of ketosis. He has also

has started having seizures for the last year and a half.

Developmentally delayed and little for his age, he also has the

ataxia. He has often bouts of vomiting for which we do not know the

cause. I am finding that I am very tired and often feel helpless. I

just want him to feel better and not have to know what it is to be

sick most of the time.

As parents of children with this diagnoses, how did or are you

getting through the hard times?

Not all days are hard but they do come up occaisionally. I am

desperate to get to know other parents who walk through this on a

daily basis. contact me at karenbrbkr@...