Got a call today from a lovely woman. She's not computer savvy and doesn't do public speaking. But she felt she had to speak out. You see her 15 year old daughter is failing. Born prematurely they knew they had a battle on their hands to make sure she survived and was healthy. What they didn't know was she had a genetic defect that would stymie them along the way. It wasn't until 2 years ago, the mom tells me, they finally got a diagnosis for their second child's woes .. she had mitochondrial disease.
Mitochondria are the powerhouses of most of our cells. When they fail, so does the body.That's a very simple explanation for a complex disease. For the most part it's genetic - but most cases are sporadic meaning no immediate family member is affected. One thousand to 4 thousand kids are born with this condition every year. There is no known cause.
This is MITOCHONDRIAL AWARENESS WEEK. The mom who called me just wants the public to know about this heartbreaking illness. Perhaps you can donate to research organizations or programs in our community, like Wildwood school, that help those affected.
For more information check out http://www.clevelandclinic.org/health/health-info/docs/1600/1678.asp?index=6957 or
http://www.umdf.org/
Got an email from a mom of a little boy who's also diagnosed with mitochondrial disease and she suggests the following websites .. many thanks for her time!!
www.mitoaction.org
http://www.onetruemedia.com/otm_site/view_shared?p=38b134ff69357fe1ff9457&skin_id=601&utm_source=otm&utm_medium=text_url
http://speech-language-pathology-audiology.advanceweb.com/common/EditorialSearch/AViewer.aspx?AN=SP_07jun25_spp10.html&AD=06-25-2007
www.heartbeatsformito.org
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