Amy's fight to keep smyelin
Fundraising to help me get to Chicago to undergo a stem cell transplant to halt the disease progression of my Multiple Sclerosis.
I woke up on my 20th birthday in 2013 numb down the right hand side of my body. One month, 2 MRI's and 7 lumbar punctures later - I was diagnosed with MS. My life changed!
I have gone from having little to no understanding of MS to having my life and health ruled by it. In only 13 months I have had 5 relapses and now suffer from weakness, sensory loss, tingling/electric sensations, pain, severe fatigue, depression, and anxiety. Reduced hand eye coordination and memory loss have at least given me an excuse for being clumsy and forgetful but what I really want, what I crave, is a future, something I took for granted for twenty years.
I have recently been put forward for funding of beta interferon which involves injecting myself with an immunosuppressant daily. This treatment works to reduce relapses but has not fully kept my relapses or my symptoms at bay. It only delays the inevitable decline.
A revolutionary stem cell transplant has been developed to reset your immune system and halt disease progression. I've spoken to several people who have undergone the transplant who are doing incredibly well and are living lives they only dreamt of when MS ruled their world. Many others who have received this treatment are still well over 5 years later. This is available in several places but the cheapest option is Moscow, Russia.
Donations will be used for flights to and from Moscow and for the cost of the treatment and stem cell transplant. This 5 week treatment involves strong doses of chemotherapy that will compromise and potentially permanently destroy my fertility. If sufficient donations are received some will be used to receive fertility treatment before chemo to increase the possibility of one day having a family of my own.
I appreciate you taking the time to read this. It is my goal, as well as fundraising, to spread awareness of MS and this revolutionary treatment.
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For those of you who have been along for the journey with me since the beginning, i'm sure you're about as sick of the location updates as I am! Our first goal was Russia, then we accepted a placement in Israel because they could see me for treatment much sooner....then the Israel clinic ran into issues and had to postpone my treatment. SO, here we are with our 3rd and I REALLY hope, final location for treatment. I am starting my HSCT journey (which truly started about 2 years ago now) on March 28th 2016. The incredible, kind and compassionate team at Northwestern hospital in Chicago, Illinois have accepted me on compassionate grounds following the issue with Israel's treatments. I've never felt more confident with the treatment than I do being in Doctor Burt and his teams hands. Dr. Burt pioneered stem cell transplantation for MS patients more than 21 years ago and is an absolute master of his craft. Fingers crossed that everything goes to plan over the next month, but assuming it does, we're all set for a couple of months in the USA!
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This page was created on 15 Dec 2014 and closed on 1 Apr 2016.