When I was first diagnosed with MS, there were only three medications available, and they were all administered through injection. I had to give myself a painful shot three times a week. Since then, oral therapies have been created; however, whichever therapy you are taking, old or new, they only slow the progression of the disease. There is no cure and there is nothing available to reverse damage or stop your body from attacking itself.
There are four types of MS. My MS has progressed into what they call Secondary-Progressive MS (SPMS). In SPMS, symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. My condition is now at the point where I have exercised all possible resources and treatments. I find myself with no other options than to go to Russia for a treatment called aHSCT. aHSCT is a treatment to stop the progression of MS. I am a "hop, skip, and jump" away from needing to be in a wheelchair, this is every person diagnosed with MS' worst fear.
When my husband first told me that there was a treatment called aHSCT being performed in Russia on people living with MS and that it stopped the progression of the disease, I was interested. Once he said that I was going beacuse it was our only hope, I laughed because I thought he was joking, but he was serious. How could I leave my babies for so long?! I then researched it more and cried because it is an intense, long process. Ultimately the decision was mine and after some time thinking long and hard about whether or not I should go, I have decided that this is what I have to do for myself and my children. It is still very scary, but it is also the only option I have. This is the only way to get my life back.
This treatment is available in Chicago, but I do not qualify because my MS has too far progressed. Insurance does not cover this treatment regardless of where I get it done. I have done extensive research of the few facilities around the world that offer this life-changing hope, and Russia is the best place to do it for me.
Why would anyone go to these extremes? When it gets this bad, you have no other choice. This is the only ray of hope I have, and it is the last chance I have to prolong my life and involvement in my children's lives as they grow up. I have two children, ages six and four, and they need more from me. They already know too much about what I can't do. I want to bring my son to school and pick him up. I want to be able to take my daughter to all of her after-school activities. I want to go to the beach and play with them on the sand and in the water. I want to run around like a normal 36-year-old mom.
MS has attacked my spinal cord for so long that I now walk with a limp. I cannot walk for any "long" length of time. Going up stairs is incredibly difficult. My balance has been affected and I often fall. I have to rely on my parents to take my son to school because I cannot walk the distance from the car to the door of the school. I need a lot of help getting my daughter to and from her after-school activities. Basically, everything is harder. Sometimes I can't carry a laundry basket from one room to another. I certainly can't carry it up and down the stairs. My family has moved from a two-story home. because stairs have become too difficult for me. My life is full of "I can't do." Navigating anywhere with a crowd is a nightmare because of my lack of balance. That means missing out on a lot of life events. Although I am missing out on so much, I really miss being "normal" the most: Picking up and dropping off at school, stopping at a store to pick up groceries, going to the playground with my children; all of the normal, everyday activities are out of reach for me right now.
The gist of the treatment is: (skip to "The Technical" for more detail)
1. My stem cells will be collected and stored.
2. I will recieve 4 days of chemotherapy to destroy my immune system.
3. I will get my stem cells back and be MS free! No new progression!
The following link,
will give you all of the details if you are interested.
The damage has been done but this treatment should stop any more progression, and whatever abilities I get back are a blessing.
I was on a year-long waiting list and was given the date of May 17, 2018. I will be in Russia for 30 days (hopefully not any longer, but issues do come up sometimes).
The cost of treatment is $50,000.00 U.S., and there are other costs involved including: The flight to and from Russia, a visa, and my mother will be coming with me and staying at a hotel the entire time to help and support me.
This is my last hope at getting my life back, at being able to do simple actvities with my husband and children again and to feel happy again. Please, please, please help me get this life-changing treatment.