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, September 3, 2012

Welcome...

Hi!


I am SUPER C !!


or






Captain C

Either way, I am on a journey.

Here is a quick run down of our whirlwind:

  • April 2011: Running and playing and as they say "All boy"
  • June/July 2011: started having problems walking by late afternoon. My feet hurt, I tiptoed and my hands sometimes turned different
  • August 2011: School started and I started using a wheelchair while at school. I could stand some, I could walk, but it was real slow and sometimes really hurt.
  • August 2011: The nuerologist has said that test show my basel ganglia is not working right and the first suggestion that I have a disease without a cure. 
  • October 2011: After many doctors appointments and test, an appointment with a Mito Specialist in Atlanta, offered the first name for what might be happening to me: Mitochondria disease
  • November 2011: Happy BIRTHDAY to me!! 6 years old!
  • December 2011: They diagnosed the disease as Leigh's Syndrone. My trunk muscles have weekend and so has my appetite.
  • January 2012: Full time wheelchair; but now we have a ramp at home! And an electric wheelchair on its way. I requested YELLOW.

This is our journey. This is our struggle. This is our battle. As you join us, please pray for us too. The prayers and love of so many are holding us up and giving us strength.





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