Re: 8 yo Daughter Just Diag. w/ Mito Enceph Complex 1/Mr. Dad

[Guest guest]

Dear Mr. Dad:

Here is the good news. You have dx. As you know after such a long time, it gives you soemthing to hang your hat own. On the other side, this is not the hat you have been wanting.

Mito runs differently for all our kids. There are many symptoms and challenges we all share. Yet in the end everyones body has a different way of managing the disease. This makes it particular challenging for the medical community. There is no forecasting and predicting. You start dealing with the challenges as they arise to the best of your abilities and always , always hope for the best.

This group is the best support. We are here for each other not only to learn but also help us with our emotions. I have yet to find someone that can relate to us as the folks in this supportive enviroment. It goes back to...only once you have walked in these shoes....

Welcome

rosy, mum to max, 5 1/2, mitchondrial myopathy, complex 1