Mitochondrial disease is a disease that affects children and adults of all ages, races, and gender. More common than cystic fibrosis, mitochondrial disease is characterized by a defect in the body's ability to make energy, and causes symptoms that range from moderate to severe. Like running the body on a "low battery", mitochondrial disease affects a person's entire body and can change moment to moment, day to day. There is no cure.
Join me in our mitochondrial disease awareness campaign, share this message to your friends and learn more at:
www.MitoAction.org
www.gmdaw.org
www.umdf.org
www.mitocanada.org
www.amdf.org
This is our Mito:
I started my blog years ago to promote awareness after my oldest daughter, Kennedy was diagnosed with Mitochondrial disease. Kennedy has gone through many changes and is effected very severely. There is no cure but we are trying many different things to help with her symptoms of make her life a little easier. This week she finally got a new seating system for her wheelchair. That is one way Mito has effected her so much. She went from being able to walk with a walker, to having a stroke like episode a few years ago, to having to be pushed in a wheelchair. Over the past year she has been hospitalized several times for seizures and stroke like episodes. She even broke her leg during a seizure. Today she went through another EEG, and was warmly greeted by all the techs that unfortunately know her too well (too many visits). We are waiting to hear if any of the five seizure medications need to be adjusted due to movements starting back up again. She missed so much school last year dealing with these seizures and movements. She also seemed to get sick everytime she went to school last year, so this year she is now homebound.
We also found out that our youngest daughter, Lauren, most likely also has Mito. She has so many of the same symptoms/characteristics that Kennedy had when she was her age. Next week she goes back to have her eyes checked....which is one area that she has made some progress. We were seeing her eyes turn outwards often, but that has mostly gone away. Her unsteadiness however has not gone away. The more independant she is becoming moving around the house, the more noticable her ataxia(wobbliness) is.
This disease can effect people so differently, but for all there is no cure. So we need to bring more awareness to this disease to get more funding and research to help all those effected. See how it effects some others by checking out my blog roll where there are other families effected by this disease, or you can see stories submitted by families effected at UMDF.
