About Mitochondrial Disease
Mitochondrial disease comes in many forms and affects many parts of the body. Every 30 minutes a child is born who will develop a mitochondrial disease by age 10. But very few doctors in the world know how to spot or treat it.
While mitochondrial disease was identified in the 1960’s, its role as an underlying cause of diseases such as autism, epilepsy and organ failure in children has only recently been explored by a handful of doctors who are making new strides every day.
Exact numbers of those affected are unknown because so many children are misdiagnosed or go undiagnosed, but mitochondrial disease is approaching the frequency of childhood cancers.
About Ellie’s Particular Disease – LBSL
LBSL is a degenerative brain and spinal cord mitochondrial disease. LBSL is a rare genetic disorder that does not allow those afflicted with it to produce a protein essential for production of myelin, a critical substance for proper functioning of the brain and nervous system. Myelin provides insulation – much like the plastic coating around the wires in your home. It is also essential for transmission of signals from the brain to the rest of the body. Almost all cells in the body have mitochondria, which are tiny “power plants” that produce 90 percent of the body’s essential energy. Mitochondrial disease means the power plants in Ellie’s cells do not function properly. When that happens, some functions in the body are not able to perform at adequate levels. Organs that require massive amounts of energy, such as the brain, are often the most affected. Unfortunately, like many Leukodystrophies – there is currently no cure for LBSL.
Finding a Cure
While there is no cure for LBSL, Ellie’s friends and family are not without hope. They plan to support research that, with God’s help, may one day lead to a breakthrough and eventually a cure for LBSL and other types of childhood Leukodystrophies.
So, we are a full week late on this, but hope all our friends had a happy 4th of July. Ellie walked the entire parade! Four years ago that day we knew something was very wrong when she wouldn't get out of the stroller. So thankful to God for her strength and to all of you for your support. Have a wonderful weekend!
This week, three more families with LBSL children contacted us out of the blue. They are from all corners of the globe - literally: (Brazil, Russia and Germany). They wanted to know about Ellie's prescription vitmain cocktail and how they too can keep their children strong. We hope Ellie's story will make a difference. Please keep these families in your thoughts and prayers this coming week.
- Went 2 beach w/ my lil Sis this weekend. #stayingstrong #grateful #lbsl #leukodystrophy t.co/65EpDcnLqm
- @AbingdonSciGuy u wld b proud of me. Went to science place in Fairfax and tested density. Also made magnetic slime. t.co/z2NWr8X1d1
- RT @AbingdonGIFT: We love it! Come back next week,too! #AbingdonES t.co/GQNrB6cf62
- RT @literacyladies5: Our book bus captain for the night! Winner from our silent auction @Cure4Ellie @Fairlington5K @AbingdonGIFT http://t…
- RT @CheckOrphan: "I want to be #Alive" t.co/oEzVyUyMpU Don't you, too? Please RT! t.co/QdukaEP7Ei
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To contribute and help the children affected by Mitochondrial Disease, please make a tax deductible donation at ACureForEllie.org or send a check made out to A Cure For Ellie – 4414 36th St. S. – Arlington, VA 22206.