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!

 

Cori

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Thanks Brian.

Brian Denger said:
Hi Ofelia,

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.

Brian
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
Ian, I totally understand, and you my friend are way more then a 'lump of money' and I don't think any of us look at our kids and say 'oh this is going to cost so much to raise him'...I wouldn't give up Trey for the world and I know all of the other moms and dads on this board feel exactly the same way...we've raised over $30,000 for a cure these past 5 months and I don't do it thinking 'I have to raise this money or my son is going to cost me a fortune'...I raise it because I want to, because I want to save Trey, because I want to save you, because I want to help all families, and because I am able to.

I think what this gentleman, mind his wonderful heart when he asked this question as gently as possible (I can't imagine the guts it took for him to ask it as I had even a hard time posting it), wanted to know how much would it take to help, to make a difference. Is $1000 spread to 10 families better and going to help or is $5000 to 2 families or $10000 to one family...if you have never been dealt this cards, you don't have a clue of the financial aspect. At the point when he had asked this question he already knew Trey's favorite things, Trey's schooling, Trey's life w/o respect to DMD...Trey actually was golfing with the others and had treked a long way off 'course' to play with a puppy and before we knew it him and the other kids were a pretty long distance away, I made the comment 'goodness I don't know if Trey's gonna be able to make it back' and he proceeded to ask 'are his knees bad?'...this is where DMD came into play and an hour or so later insurance, etc had been talked about.

I don't particularily like talking about it to anyone, I don't particularily like facing reality to be honest, but I think, I wish actually that we had more people that had this huge of a heart instantaneously.

Ian Anthony Griffiths said:
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
I totally appreciate his offer it's immensely kind and noble. I was just making a point to talk about this sensitively bearing in mind the one's actually living with it.

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