$225.00

Zach and Shane were both born with a genetic disorder called MCAD (medium chain-coacyl dehydrogenous deficiency disorder).  It is something that is tested for on the new born screen and has only been tested for for about 19 years.  The disorder prevents their bodies from breaking down fats and sending sugars to their brain.  Without these sugars sent to their brain they can have seizures, go into a coma and even die.  This is a manageable disorder that they will have forever.  We take precautions with them, some of these precautions include constant calories (need to eat their meals and drink juice), gatorade in the summer for the sugar instead of water, and when they are sick and vomitting they are taken to the hospital for special fluids to keep them out of a metabolic crisis.  85% of the SIDS cases were from this disorder.  Many people have not heard of MCAD and every time we go into the hospital it is left up to us to explain it.  Let's raise awareness for this disorder!

Golisano Children's Hospital has been incredible.  Between the two of them Zach and Shane have been in the emergency room/admitted 14 times!  So much more then any kid should endure but every time the hospital is incredible.  They take such good care of the kids and even work hard to keep them entertained.  The last time we were there they even had a music therapist come in for Shane.  Shane also had his emergency GI surgery for pyloric stenosis done at this hospital along with his heart surgery.  Please help us raise money for this hospital so they can continue to do what they do to take care of other kids as well!  Thanks for your help!! We really appreciate it!