Actually, it's two diseases. Separately, they are known and respond well to treatments. Together however, they are really bad and have very high death rates. But this CAN BE BEATEN!
As I mentioned, it's rare. One paper I read said there were only 27 mentions of it in the medical journals. It is so rare that none of his physicians have ever seen it and frankly, I think they are excited to be on the case.
The good news is that we discovered it early.
So, why the big figure? The drugs the doctors are talking about aren't cheap. IVIg at $6000 for a 2 day supply, Rituximab at just under $1000 a day. Money goes fast in medicine.
Unfortunately, thanks to switching insurance carriers, my family is without health insurance this month. We're on day 9 of Alex's hospitalization. No idea how long our stay will be. I'm pretty sure the State is going to help us out with the hospitalization but I'm not so sure about the drugs as they will probably be off label usage.
When we beat this disease into remission there is the possibility of relapse. Alex will need long term care to monitor this and maintenance treatments on a regular basis.
So, if you're in a giving mood, please help our adorable red head Alex win his fight and please remember to keep him in your thoughts and prayers. Thanks so much ❤ Please share this with your friends.
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