What is Leigh's?

What is Leigh's Syndrone? Our Journey Home blog explains it so well: Imagine a major city with half it’s power plant shut down, at best this would cause a major black out. Now imagine your body working only to one half, the brain is impaired, vision is dim, muscles twitch and you are weak and your muscles are too fatigued to walk, crawl, or write. Your heart is weakened and you are not able to digest your food. For a large number of people, especially children, this is a fatal disease. Leigh’s Disease is one of many recognized Mitochondrial Diseases. Leigh’s is a progressive neurometabolic disorder with a general onset in infancy or childhood, often after a viral infection, but can also occur in teens and adults. It is characterized on MRI by visible necrotizing (dead or dying tissue) lesions on the brain, particularly in the midbrain and brainstem. The child often appears normal at birth but typically begins displaying symptoms within a few months to two years of age, although the timing may be much earlier or later. Initial symptoms can include the loss of basic skills such as sucking, head control, walking and talking. These may be accompanied by other problems such as irritability, loss of appetite, vomiting and seizures. There may be periods of sharp decline or temporary restoration of some functions. Eventually, the child may also have heart, kidney, vision, and breathing complications. One estimate of the incidence of Leigh’s is one in every 77,000 births, however this may be an underestimate as mitochondrial diseases tend to be under-diagnosed or misdiagnosed. There is no cure for Leigh’s Disease. Prognosis is poor, depending on the defect individuals typically live anywhere from a few months, to a few years, to their mid-teens

Friday, September 21, 2012

Mitochondria Awareness Week

Tommorrow wraps up the Mitochondria Awareness Week, as far as the "national" spotlight goes.  We know that this, unfortunately, is not just a one week affair. This needs attention everyday of every week.  Dedication of medical research. A cure to be found.

The community and family continue to rally around our family and work to raise the money to be a part of an upcoming drug trial of EPI-743. It looks like all bets are off on the trial in Ohio. California is the next destination. Sounds like a good spot!

Many more families are striving to be a part of this study also.  CNN ran a story today featuring another family fighting this fight and heading to a drug study.  Check it out HERE...

And don't forget . . .


Energize me even after this week!
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)