Stem Cell Transplant - Robins last hope

After 23 years of battling a progressive form of Multiple Sclerosis the loss of function has progressed beyond my ability to stay in my home.  During this time I have tried and taken all the latest and greatest MS medications, but for the last few years nothing seems to be helping.  You don’t stay home as long as I have without having a never give up attitude.   

Unfortunately things are no longer in my control. It’s looking pretty bleak - until now. There is a ground breaking STEM CELL transplant that is not only stopping the progression but is also repairing some of functions lost over years. The problem however is this treatment is not covered by conventional insurance and is very expensive.

THIS IS WHY I AM ASKING FOR YOUR HELP  

At the age of 27, I left my country of birth, South Africa. Back then we were not allowed to take more than R10000 ($1000) out if we left.  So in order to chase the American dream and create a safer and better environment for my family I walked away from everything I had built up so far.   After being here for a few years I met and married the love of my life. 

Three months into my new marriage I was diagnosed with Multiple Sclerosis (MS). The funny thing about struggles in general is they force you to think outside of the box.  In most cases, particularly mine, it has the power to change your life in a positive way and it certainly did for me.   With the right amount of time and effort, your biggest struggle can become your greatest triumph.   

Over the past 20 years I have tried every conventional Disease Modifying Drugs to treat MS as well as loads of alternative therapies, including diet and exercise programs. But my MS kept getting worse. Three years after my initial MS diagnosis I was re-classified as having a progressive form of MS, “secondary progressive” . Compared to the most common form of MS, “relapsing/remitting“ the progressive form means rather than having exacerbations and then periods of being better the disease and accompanying disabilty simply progress every year with illness and disabilty becoming increasingly worsened . I have been fully wheelchair-bound for 13 years. Since my diagnosis I have tried to be a positive influence for people with MS and others that might be struggling. 

Today I am the one who needs your help.  

Fighting a now progressive form of MS for the last two decades has taken its toll.   I have to do something different…. I’m running out of time. The next step for my care is a full-care nursing home. My wife is my full-time caregiver and we both are pretty weary and worn out at this point. I’m only 52. I don’t want to leave my wife and our home and our life that we’ve built together. Care homes are expensive, so is in-home care. Neither are covered on insurance (unless you take out specific insurance for long-term care which is extremely cost prohibitive and I was excluded from obtaining it because of the advanced stage of my disease and pre-existing condition). 

If I’m forced to go into a care home life for my wife, Paula would get harder in completely different ways and she would be living a very financially strained existence. We want to still stay married, and what kind of married life is two people living in a separate places? Two people struggling financially? Me being in a home that would most likely be filled with very elderly and infirm people.

A place were I don’t even get to enjoy even the simple things in life with my wife, my family and friends? Not to mention it would not be very likely that I’d ever see my daughters, my grandkids, my brother, his wife & kids and my dear parents possibly ever again. They all live across the planet and would be hard put to get to America just to come visit me in a nursing home. 

At this point I’m hoping and praying for one last chance.. One last hope to not only stay in my own home with my wife, and be near my family up here in Idaho, but to have even a chance to be well enough to travel, at least once or twice more to see my side of the family abroad.  

There is a stem cell transplant for MS called Hematopoietic Stem Cell Transplant (HSCT), but it is not approved or covered in the US. As of right now in the US the only way to get this treatment is through clinical trials, but because of the advanced stage of my MS they will not let me partake in these trials. 

You see, they only want the younger people whose MS is not as advanced to partake in trials, that way the results have a much better chance to look promising- compared to someone who has been as disabled as me for such a long period. I’ve applied many times and they always say the same thing “You are too old and or your disability is to advanced to be accepted.” 

So the only way for me to get the transplant is to go outside the US and pay cash. We need to raise funds for the actual transplant cost ($54,000), hospital stay ($4500), possible rehab time post transplant ($???), travel etc. For now, just having the HSCT treatment covered would be a dream of a lifetime, and a chance to see if I could have a bit more of my life lived in my home instead of a care home.

Having this transplant will change my life and only with the community’s help can we make this happen. All and any help will be greatly appreciated.