Ian's Mighty Mito Warrior Squad

Ian was just 2 days old when he spiked a fever. He was life flighted to Danville. They did heavy antibiotics and ran a ton of test but couldn't figure it out.  We left after a short stay with it was low blood sugars but no real answer. From November to April we had been hospitalized 3xs for pneumonia.  He was diagnosed with failure to thrive,  asthma and developmental delays. We had early intervention involved because by 6 months old he couldn't sit or roll. He actually didn't do anything but sleep.  We finally got a swallow study and it showed he was aspirating every time he swallowed. This is why he had so much pneumonia and was so sick. And wasn't gaining weight.  For 2 months I had to wake him every hour to try to eat and every 2 for breathing treatments. We finally get an NG tube placed and he started to gain weight and develop. But there was still so much wrong. The swallowing disorder, his lack of growth, extreme fatigue,  his muscles being "floppy" , sezuire like activity,  poor eye sight, low kidney and liver functions... so we saw every specialist we could and no one had answers. That's what led us to CHOP. Because I was thinking mitochondrial disease.  But it's rare. And hard to diagnosis. 

Ian was diagnosed with mito by blood work, symptoms and a muscle biopsy. 

Mito is a progressive disease.  The mitochondrial is the "power house" of the cells. So his cells don't have enough "power" to produce correctly. His happens to be in the complex 4 and that effects, airway, digestion, kidneys,  eyes, muscles and heart.

And as he gets older more things will just "go" in his body. So it's important to do what we can now to enjoy the little sickness he has (it's not little but only will get worse) and do everything we can to make sure he is comfortable.  He has huge amounts of lactic acid and had horrible muscle and nerve pain throughout his body. He can't regulate his body temp so he overheats very quickly. So he will never get better or live a "normal" life... 

 

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