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.
I am updating this as of 10/27/17 as a lot has changed since I initially started this page.
Johnathan has a genetic disease called Mitochondrial Depletion Syndrome, on top of this life threatening condition he battles Epilepsy, POTS (a form of dysautonomia), Primary Immune Deficiency, a Hypermobility Syndrome (believed to be Ehlers Danlos Syndrome), severe Intestinal Dysmotility, Intermittent Ataxia, Asthma, and both Central and Obstructive Sleep Apnea.
Check out www.umdf.org or www.mitoaction.org for more information on Mito
Johnathan as of Oct 2nd 2016 is completely dependent on IV nutrition through a central vascular line (basically surgically placed IV to the heart). He also receives most of his medications through this line. He still has a GJ (Gastrostomy/Jejunostomy) tube for decompression and a couple meds. He suffers ataxia that comes and goes and can be mild to severe enough he's completely unable to stand or walk alone, he has become largely dependent on the wheelchair whenever outside of home. His speech also comes and goes with these "flare ups". He cannot regulate his body temperature properly, and struggles to maintain his glucose levels requiring his IV fluids and nutrition to run 23hrs/day. 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, 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 set up a go fund me page for a vehicle which we were blessed to purchase! We have incured $3,000 in repairs to it this year though so could still use help if you are able. We really appreciate it! http://www.gofundme.com/Johnathanthebrave