Over the past few years, the people who care about her have watched as the strongest, smartest, and most independent woman I know has had her body turn against her. My mom used to run, do triathlons, swim, and play water polo. 10 years ago, she started having issues running long distances with her legs giving out on her for no reason. Then she couldn't run at all, and soon couldn't walk more than a couple of blocks. As things progressively got worse and her movement became more restricted she sought treatment from various doctors and physiotherapists who all seemed to be stumped by her condition.
It wasn't until October of 2020 that she was officially diagnosed with this rare form of MS. Today we watch as her body continues to deteriorate. She is unable to walk without the support of counters or walls, or the walker she has reluctantly begun to use. She becomes exhausted by everyday tasks like walking up the stairs or washing dishes and experience numbness and pain in her legs, especially on her left side. Essentially, her immune system is attacking her own central nervous system.
Only 15% of those diagnosed with MS have PPMS and there are few treatment options. The worst part of PPMS is that her symptoms continue to get worse and at the rate she is progressing, it won't be long until she is in a wheelchair. Many people with PPMS end up bedridden, losing even the ability to swallow.
Not one to give up, my Mom spent as much time as she could researching PPMS and her options. Through forums with other MS patients, she has learned of a treatment called Hematopoietic Stem Cell Transplantation or HSCT.
HSCT is a chemotherapy based medical procedure that ablates your immune system and reboots it using your own stem cells harvested from your blood or bone marrow. It is the only Medical procedure currently available that has halted the progression of the majority of patients undertaking it. It is not 100% guaranteed in halting everyone's disease, but many patients have had success. As the aim of HSCT is to HALT the progression of the autoimmune disease, any healing of symptomatic damage already done is a bonus and not guaranteed, some patients get fabulous healing, others see small healing and some do not get any healing, which is why it is encouraged to have it sooner rather than later. There have been trials for HSCT in Canada dating back to 2001 but it is not currently an approved treatment, so there is no health insurance coverage. The only options for treatment are in Mexico or Russia. After much deliberation, our family has decided that Mexico is the best option. This out of country treatment would cost $75-100K – money we do not have.
The sooner we can raise the funds for my Mom's treatment the sooner she will be able to go. With the progression of her symptoms she is at a level where they will accept her, but with the acceleration of her condition we don't have a lot of time. This was not an easy decision to make and the results are not guaranteed, but it is the best chance she has to live a semblance of a productive physical life. The woman who gave up everything to raise myself and my two younger brothers Joseph and Riley does not deserve to sit idly as her body destroys itself, no one does.
Attached is a link to the clinic that would be performing the treatment and a YouTube video explaining the treatment for anyone is interested in more information. I know that with the current pandemic this is not a great time to be asking for help, but anything you can spare would be greatly appreciated. This fund is setup because my mom is too proud to ask for help herself. There is a short timeline to try and stop her progression, so I am here to ask in her place to please help us raise the funds to help my mother preserve her already limited physical situation.
HSCT YouTube video
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