Welcome to Johnathan's caring Bridge site. I felt like I needed to find a way to update everyone in one fell swoop, but several friends don't have facebook. So anyone can see this site. That way even people we don't know who have been praying for him can get pictures and updates.
Johnathan has a disease called mitochondrial disease. Rather than try to explain the range of diseases itself check out www.umdf.org I will share some of his challenges because of the Mito though. He has epilepsy and still has breakthrough seizures pretty regular even on meds, as well as ticks and tremors. His stomach and intestines don't have the energy to work quite right so he has a gj-tube through which he receives between 100% of his nutrition. He suffers ataxia that comes and goes and can be mild to severe enough he's completely unable to stand or walk alone. His speech also comes and goes with these "flare ups". He cannot regulate his body temperature properly, and is currently struggling to maintain his glucose levels. They also have officially added asthma (believed to be caused by the mito affecting his respiratory system) to his list of diagnosis. But these are just complications his body likes to add to his life, because when you look at his smile you'd think he was the healthiest kid ever due to his happiness.
We've spent a lot of time in the hosptal so far this year, but try hard not to let it get us down. We hold out hope thst one day they will find a cure, but for now just treasure every moment we have especially the good days.
We are in desperate need of a reliable vehicle and have set up a gofundme page. If you can find it in your heart to donate we really appreciate it! http://www.gofundme.com/Johnathanthebrave