Mission: Stop the Progression

My name is Jim Dewey and I was diagnosed with Multiple Sclerosis (MS) in April, 1992, when I was 27 years old.  At that time I was a very active athletic person with a full-time job.  Over time I went from easily cycling 25 miles a day to 10, then 5, then 1, then just around the block, then in 2008 I sold my bike on Craigslist.  Balance and muscle control issues in my legs made cycling and other normal physical activities unsafe to impossible.  Fatigue made it impossible to complete my work tasks, and I was forced to go on what they call "permanent and total disability leave."  From time to time I have suffered with depression and hopelessness, trying to find purpose in my diminished arena of ability.  I am grateful to my family, my wife and son, for keeping me positive, to the extent they can.

Through all my years of battling MS through diet, exercise, and just about every MS medication available, I've kept up-to-date on new developments in the MS treatment field.  I've read about and participated in research studies.  I've attended dozens of seminars and workshops, support groups, retreats, and investigated every thread of reliable information out there.  There is still no cure for MS, and no definitive explanation of its cause.

My MS has progressed from using a cane 10 years ago, to a walker, to a power chair part-time, and now to a power chair full-time.  I've reached the point where I am wheelchair-bound and I continue to lose upper body strength.  With the prospect of 24-hour care looming within a few years, my neurologist has recommended I get HSCT (Hematopoietic Stem Cell Transplantation) as soon as possible.

This procedure is not available for Secondary Progressive MS in the United States, and it is not covered by insurance. Several countries do offer it, with slightly different programs that range from $50,000 to $200,000 per treatment, plus travel and housing costs for me and my family.  Right now I am in the process of evaluating and applying for those international programs that are willing to accept Secondary Progressive patients at my level of disability, have the most experience completing this sensitive procedure, and have the highest documented success rate.  My goal is to stabilize the progression of the disease and hopefully, with continued exercise and care, regain my ability to stand and transfer safely.  This would hold off the need for more intense intervention in my daily life, and allow me to continue to live at home with my family.

I have read a great deal about these facilities and I've spoken with two MS patients who recently underwent HSCT treatment overseas.  They both called it a life-changing experience, with improved nervous function leading to better walking, bladder control, cognition and so on. Again, my goal with this therapy is disease stabilization; any actual improvement in my thinking, memory, energy and physical abilities would be a welcome blessing.  

My 10-year-old son has never seen me walk. I want to be here for my wife and son as a support in their own times of need, as a role model and guide as we embrace life and negotiate its challenges, and most definitely, I do not want to be a burden. 

Unfortunately, since I'm not able to earn as I wish I could through full-time work, I cannot cover the costs required by this potentially life-changing treatment.  It is with deeply conflicted feelings that I turn to this forum for fund raising.  I would not be here if I had other options. 

Any contributions to this campaign will be greatly appreciated, of course by me, by my immediate and extended family members, and possibly by the worldwide MS community that is tirelessly searching for an answer to the frustrating mysteries of this debilitating disease.  

Thank you for your consideration.