Georgia's Pompe

Pompe disease. What?  That was our reaction we they told us she might have it. A rare genetic disorder that only affects 1:44,000 people. Not much can be learned on the internet. There is no cure and the only treatment has only been around for about a decade.
Needless to say we were floored when we got the call. We were even more devestated when we learned she had the infantile form which was basically giving our sweet little girl a death sentence.
But a ray of hope. One of her bad genes was only partially effected. So the treatment she could get would not be rejected by her body. A treatment that will require an infusion through an IV every two weeks for the rest of her life.
This page has been setup to help us in the cost of driving 2.5 hours every two weeks. Missing work every 2 weeks. Child care every 2 weeks. We honestly have no clue how much we will need. A seperate account has been setup for Georgia so you can be assured every dollar received will go to Georgia and her care. Any excess will be donated to research and public awareness of Pompe.