I don't know if you are aware of what Multiple Sclerosis is, but here is my best attempt at an explanation: MS is an autoimmune disease where the immune system gets confused and attacks its own central nervous system, destroying the protective coating for our nerves. This causes a short-circuit (think of a wire gone bad) and interrupts communication throughout the central nervous system.
There are more questions than answers with this debilitating disease and it has changed our lives. I won't burden you with the myriad of symptoms Andy has suffered, but they are many and they aren't pleasant.
If you know Andy, you know why he is saying "NO" to this MonSter! The guy with the Charlie Brown tattoo has done extensive research and is determined to fight!
A year ago, Andy was so, so close to getting into a HSCT (Hematopoietic Stem Cell Transplantation) study at Northwestern University in Chicago. The rationale for this treatment is to suppress or destroy the defective immune system and renew it by reinfusing ANDY'S OWN STEM CELLS back into his body after high dose chemotherapy, essentially "rebooting" his system. This therapy has led to disease remission and a re-establishment of health and well being for many patients.
Andy explained it like this: My body is a school and there are a bunch of bad middle-school kids tearing up the place. Get rid of them, then inject the school with a bunch of kindergarteners and start over. LOL! Makes total sense now, doesn't it?
Unfortunately, due to a "clerical error," the Northwestern University process was stopped just days before admission. Our insurance company deemed the procedure "experimental", therefore, not covered. We were devastated. We put together a 49 page appeal and we took it up to the highest level (IRO--Independent Review Organization) only to be denied 3 times. Devastated again. HOWEVER, if we had $250,000, he could have gone straight into the study, possibly had the treatment immediately, and been fully recovered by now.
Andy continues to hang in there amid on and off exacerbations (attacks) and MRIs continue to show enhancing lesions on his brain and spine. Any day, things can take a turn for the worse, he could have an attack and lose his vision or his ability to walk. His last MRI showed a large, frightening lesion and the neurologist said he was "lucky" that it didn't affect his motor strip. ACK!
Even after hearing news like this, Andy refuses to sit idly by and suffer from this life-long, incurable disease! He discovered yet another program in Moscow that will perform the same HSCT for around $40,000 (plus expenses). Of course, so many others are discovering it as well, so now there is a long waiting list. We are prepared to apply in September when they will be receiving applicants again. But while we wait, we need to raise funds!
We don't know much of what lies ahead, but here's what we do know:
• We've done enough research to know that HSCT is effective and it WORKS.
• We know that Andy has not responded to a single MS drug (except for horrible side effects!)
• We know that Andy doesn't deserve to live with this awful disease. No one does.
• We know that there are so many wonderful people out there who care about Andy and want to help in any way they can.
• We know that when you have hope, you have everything.
We cannot do this alone. Please consider donating what you can, because money is the obstacle that stands between this amazing man and a normal, healthy life. Any amount is GREATLY appreciated.
From the bottom of our hearts, thank you.
Janine and Andy
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