I ran into a gentleman over the 4th and we presumed to talk about Trey's diagnosis, and he asked me a simple question that I don't know the answer to..."What are the medical charges associated to having a child with Duchenne's in a 20 year span..." Does anyone know the answer to this?
This is the first time he had ever heard of Duchenne's and although I was trying to get him to make a rather large donation to a 'Cure', it appears he wants all the information available he can get and potentially wants to help a family or two that are struggling. We don't need the help as the Navy is taking care of us, but want to get this information over to him ASAP so if his heart is telling him to help a family maybe it could be someone on here that really needs it...
His big concern was insurance is 'difficult' nowadays, what happens when a family (like us) don't qualify for Medicaid or SSDI and insurance won't pick up the tab...how much does it hurt families financially...
Any thoughts would be great, I have searched the internet and can't seem to find anything!
I did an analysis for an NIH meeting several years ago for this very topic. My figures are fairly good estimates based on family experience and calculations of equipment, home modifications, clinical care, lost wages and in home care. For twenty years my total is $1,666,030.00 (One million six hundred sixty-six thousand and thirty dollars.). Figures are based on all expenses both out of pocket and covered either by private or other insurance.