Imagine not being able to sleep more than 3 consecutive hours (if you're lucky) because the pain wakes you up, like being stabbed in the foot with a hot poker as you stand in a bed of flames. Add exhaustion and insomnia to the MS fatigue (which is different than just being tired) and it's hard to ever picture yourself being productive again.
In July of 2013, Multiple Sclerosis first reared its ugly head. This first episode was severe, landing my husband, Robb, in the hospital for almost 2 weeks and then Spaulding Rehab for another 6 weeks, as he had lost all functioning from the waist down as well as some sensation in his hands. Robb slowly regained the ability to walk but he still cannot feel his feet and has extremely poor balance. Robb was diagnosed with Relapsing-Remitting Multiple Sclerosis in September of 2013. In Relapsing-Remitting Multiple Sclerosis, periods of exacerbation or flare ups (episodes) cause additional symptoms to appear. These symptoms can remain permanent and progressively deteriorate. This is in the fifth year of disease progression. Luckily Robb regained the ability to walk, but the loss of sensation in his hands and down his legs remain. He suffers from muscle cramping and twitching/shaking, and often cannot hold silverware or carry a plate without violently dropping them. He has frequent vertigo, nausea/vomiting, bladder issues and fatigue. His worst symptom however, is the severe neuropathy that radiates down his legs through his feet.
And this is just the beginning. MS is a progressive disease. He will get worse. We know this. We just don't know when. And there is nothing we can do, except wait and worry. Enjoy the time we have, through the pain, nausea and exhaustion. There is no cause and no cure, and there hasn’t been anything we can do…..until now.
I first learned about HSCT a few years ago. HSCT (Hematopioetic Stem Cell Transplant) has been proven to be effective in stopping MS in roughly 80% of sufferers. Additionally, many people experience symptomatic improvements as well. After extensive research into every aspect of HSCT (e.g. scientific studies, different facilities as well as connecting with people who've been through this procedure around the world), we decided that this is what we need to do. The only thing standing in our way is the price- this treatment costs over $50,000 at any reputable, yet cost-efficient facility. Unfortunately the United States is not an option, as many other countries are more advanced in stem cell research. The one American hospital currently providing HSCT (Dr. Burt, Northwestern in Chicago) is still in the clinical trial phase, and the qualifying criteria automatically exclude Robb.
For the last few years I have continued my research, dreaming of making this procedure a reality. Between working extra jobs, and some very generous grandparents whom we will be forever grateful to, we have over half of the cost secured and decided now is the time. Those of you who know me, know I am not the type to ask for help and hate putting my story and myself out there. But this is the one thing I CAN do- get my husband this treatment and preserve what health he has left. I can't wait and worry any longer; time is brain and the time to stop this terrible disease is now.
Robb is an ideal candidate for HSCT. He has met the criteria and been accepted for treatment in Russia on January 21, 2019.
MS has crept in and affected every aspect of our lives. Please consider helping us in our journey to travel to the National Pirogov Medical Surgical Center in Moscow, Russia for HSCT.
Thank you so very much from the bottom of our hearts,
Tracy Caron, Friends and Family
WHAT IS HSCT?
Hematopoietic Stem Cell Transplantation (HSCT) is a type of treatment that utilizes the persons own stem cells (collected from blood) to reprogram the immune system. The stem cells are collected in advance, stored at sub-zero temperatures, and returned at a later stage after high dose chemotherapy or immunosuppressive therapy.
For those interested in reading more about HSCT please follow this link: http://msclerosis.ru/eng.php
Email: [email redacted]
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