New to Mito

Hi, I'm a mom of a recently diagnosed Mito teen. Our eldest, 15yrs old Leanna, suffered seizures that landed her in the hospital, Dec. '08.  Did biopsy and it's confirmed, still waiting on results of what form she has. Our world has turned upside down. Looking back, alot makes scense now, with her low energy. It's been 5 months, getting her strength and mobility back. She's getting tutored for a class at home and is just back to school for 1 class a day. It's been a huge change for her. She feels like she's lost so much. It's been tense at home with the younger two (14 boy & 10 1/2g girl) resenting their sisters special treatment she receives. I find I'm so busy taking care of everyone else, that I've lost myself in the process.  That was even before our daughter was hospitalized!

The not knowing everything is so scarey.  Leanna, seems to be affected more mentaly. She has swelling on her brain that hasn't changed. She seems to have a hard time processing things and is easily stressed. Doesn't help she's a teenager girl, just having a bad hair day can be stressful! We're doing our best to keep things simple and low key for her. Not easy when she's the oldest and takes alot apon herself. I worry about her schooling, her future, what jobs are available for someone with low energy, if she'll be able to live indepentantly, will she become more debilitated? ect.

Would love to hear from others, as I'm/we're new to all this. Doing my best to educate myself on Mitochondrail Disease, finding myself so overwhelmed with others losing their children to the disease, feeling fortunate for Leannas (present) health.