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!
This was based on a per patient rate. Making educated assumptions for necessary equipment, surgery, care, home modifications, loss of income and other factors you can seen it is quite expensive. I would say looking at the numbers and data it was a conservative estimate.
I have dmd myself and I'm 26, This guy is very noble to help out and I commend his attitude. I realize perhaps people need to have this knowledge, however I find it very distasteful to talk about our lives in terms of the bottom line and dollar amounts. It makes me feel uncomfortable and if I'm honest a little 'guilty' the we 'cost' so much. Feels like you're talking about a lump of meat. Fair enough it's a lot of money but we're more than cash. Just my opinion don't lynch me lol