Janet's HSCT Fund

My Mom's Story

Four years ago, my Mom (Janet) was diagnosed with a life-altering disease; multiple sclerosis, a permanent degenerative disease of the spinal cord and brain. Prior to, she lead an active lifestyle and held two jobs, home-schooling children and working as a machinist. At the time, we knew nothing of what it meant to have MS.

The Diagnosis
Prompted by an episode of vision loss and stroke-like symptoms,  doctors had no idea what was wrong. Although diagnosed in her early 40’s, the doctors had suspected the disease lingered for decades prior. The initial treatment was a standard medication as a first line of defense – a drug that cost $25,000 annually, with hopes at slowing the progression of her type of MS – RRMS, Relapsing-Remitting Multiple Sclerosis (which is a pattern of continual decline with bouts of remission). The funding was provided by insurance and local organizations. After this drug proved ineffective at stopping the progression of the disease, my Mom was forced to change treatment, which lead to a medication that cost $55,000 per year. With her disease progressing, no longer being able to work, and requiring daily assistance at our home, we were was left looking for alternative options. Recognizing the risks with taking MS medications (potentially speeding the progression of the disease upon withdrawal), and the financial cost associated, the future was dull.

New Hope

New research has shown great hope in HSCT (Hematopoietic Stem Cell Transplantation). We quickly did everything within our power to research the therapy and its effectiveness. This type of therapy has been investigated in clinical trials in Canada for approximately 14 years – however it is long before this therapy will be available to Canadians. So far, treatment with HSCT has been greatly effective for a range of MS patients, particularly for those with RRMS (Relapsing-Remitting Multiple Sclerosis). Patients that are unable to walk, are slowly losing their speech, and are at risk for further decline have not only been able to halt the progression of the disease – but in some cases, also repairs the damage done by MS.

Treatment Costs

After a failed attempt to get into an on-going clinical trial for HSCT in Canada, my Mom was forced to look elsewhere. Upon discovering that this treatment is available elsewhere, my Mom submitted an application and requested information. Accepted to the program, my Mom was relieved that treatment was available. The one thing lacking was the necessary funding for this treatment. The cost of the treatment is approximately $80,400 USD. After years of being unable to work and depending solely on my Dad to support our family, funding this treatment ourself was not an option. My Mom misses teaching and we hope to share her journey in HSCT with other MS patients. This treatment is her last resort at having her life back.

My Mom has always been the one to help others. She has trouble asking for help, so we are asking for help for her.

This Go-Fund me account has been set up on behalf of Janet, to raise funding for the cost of her treatment. Please consider donating, so that Janet can return to her normal life and continue to raise funds and hope for other MS patients going through the same thing.

All funds donated to this Go-Fund Me will be used strictly for treatment costs and travel to-and-from treatment.