Jons HSCT journey to sink M.S.

Jon's HSCT journey to end his M.S.
Hello,
My name is Jonathan Grove. I was diagnosed with Multiple Sclerosis in 2012.  It was a pretty big shock to say the least. I was determined to not let MS run my life, and I fight everyday to remain positive. MS on the other hand often has its own plans. This disease and I have a constant battle every minute of every day. Multiple Sclerosis has completely taken my eye sight in one eye. It has taken my ability to walk. On occasion it takes away the control and movement of my arms or hands. MS has, at a few times, taken away the ability to eat solid foods, swallow or talk.  It has taken everyday functions and made some of them impossible. Multiple Sclerosis has even gone as far as to stop me from breathing.
     I have at times spent several days up to weeks in hospitals. I have tried and am always willing to trying various treatments, procedures, medications, as well as natural remedies. I fight every day to keep this disease at bay, not wanting it to or allowing it to take anything more for me and my family.
     I have an amazing and family. They have been so strong and so patient. I have at times been a burden. There have been times that things have not been able to be done because of me.  I push myself to do as much as I can with them, that in itself most often has consequences. If I do much of anything one day, (use to many spoons *this is referring to the spoon theory.) I will lose the ability to function for the next day or two, or worse... until I hopefully recover. My family is always concerned with my spoon levels and I have seen them sacrifice their own quality of life, because of that concern & compassion for me.  
     It’s time for me to make a major victory in the war against Multiple Sclerosis. This is the only option in my head. Victory. I can not let this have me. That is where this is going if I do not do this.
There is SO much I want to share with you; I could never fit it all in here so please ask questions. This treatment is the only chance I have to fight this disease. We have been researching for nearly two years. Reading studies, talking to patients and looking into every Country and Clinic.
After applying I have been accepted the HSCT (hematopoietic stem cell transplantation) program at Clinica Ruiz in Puebla Mexico!!!  This is incredible. I am very grateful for the acceptance and can not wait for August 20th, 2018. I need HELP. Without this, I am going to continue to decline. I need your help to make it to my stemcell Birthday. This treatment is not covered by Health Insurance. HSCT is roughly $60,000. There are 2 trials in the United States (Chicago & Seattle), I have applied for both. I was denied treatment due to my EDSS score of 6.5. (They were very kind to explain that they need perfect results and will not be accepting patients with an EDSS higher than 5) Due to this, I am not a good candidate for the U.S. trials. This procedure is done in several places throughout the world and has a very good success rate.  There are many cases of patients having a return of lost function. I would be ecstatic to just stop the progression of my M.S.
*to be able to not worry about if I will or will not wake up tomorrow (breathing at night is often spotty), if I can move my arms/hands, or eat.
*not to wonder when will I be bed ridden in the future and what a burden that will be for my family.
*to do even the simplest things without worrying would be pure joy.
I miss little things like carrying groceries in from the car, changing light bulbs etc.. things that most people take for granted, I know I did. I have a facebook page in the link so you can follow along in this journey and I would be grateful if you would join me.
     I am asking for you to help in any possible way whether it is a donation or to share this page.

Thank You.    


Donations

  • Clara Risley 
    • $100 
    • 28 mos
  • T Efraimson  
    • $150 
    • 29 mos
  • Julia Willis 
    • $100 
    • 29 mos
  • Marie Faulkner 
    • $250 
    • 29 mos
  • Michelle Nicolaus  
    • $300 
    • 29 mos
See all

Organizer

Jon Grove 
Organizer
Coos Bay, OR
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