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

Monday, November 19, 2012

I Had a BIRTHDAY!

Bet you can't guess where??



Chuck E Cheeeeeese!!!!

Cheesing for the camera....

And so was Nannie behind her camera...

My friends celebrated with me. Games and Pizza and Strawberry Cake!
And Gifts!




And of course, GAMES!!!!

The ticket count?  1300!!!!



My daddy is the ultimate game buddy and that is my Annie watching us meet the challenge.

More friends . . .



More cheesing Chuck E. Cheese!


A long time ago, when I was kid (because, you know I am seven now, right?!?!) I loved Larry Boy from Veggie Tales. I knew the songs and videos. All of it. And when I was being Larry Boy, I always ate peas. Green English Peas.  They recharged my batteries so I could be fly!

The neat thing is, now, I have this super duper friend: Larry.

And Larry is like the Larry Boy now. I am Captain America and this is my friend Larry Boy:


And this was the Best Day Ever!!


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