Hi, my name is James and I am 47 years old. My wife and I have four wonderful children. In January 2021 I was rushed to hospital after collapsing, unable to use my legs. Four days later I returned home with a diagnosis of Primary Progressive Multiple Sclerosis (PPMS).

I don't qualify for any treatment on the NHS for my type of MS. Whilst we often hear of people suffering with bad days and good days, my MS is progressive so every day my symptoms get worse with no respite. At diagnosis my EDSS was 2.5. - 15 months later it is 6.5.

Whilst most MS causes lesions on the brain, mine is attacking both my brain and spinal cord and has left me virtually confined to a wheelchair. The short term doesn't look good. At the rate that I am progressing it wont be long before I am completely bedbound, unable to feed myself and my mental capacity will diminish.

Hematopoietic stem cell transplantation - HSCT

HSCT treatment has been around for a long time Russia and Mexico currently lead the way having researched and provided treatment for many years. Here in the UK we have only started researching and running trials this year. As it is so limited and my MS is progressive, I don't qualify for the trials. My MRI’s continue to show no active lesions on my brain (common in PPMS and one of the reasons it is so hard to treat). Despite a lack of active lesions, I have extremely aggressive progression of my illness. HSCT treatment is effective in 70% of patients with PPMS. HSCT aims to 'reset' the immune system to stop it attacking the central nervous system. It uses chemotherapy to remove the harmful immune cells and then rebuilds the immune system using a type of stem cell found in your bone marrow. These are the haematopoietic stem cells.

HSCT is not a cure but it does however, have a 70% chance of halting the progression. As every day passes I am losing more and more of my chance to live any kind of meaningful life. I want to continue to work in the job I love, to support my family and to be the best dad I can to my 4 wonderful children. Time is not on my side.

Together with my wife, we have been researching HSCT treatment in Mexico. They will only accept patients with an EDSS of 6.5 so it is now or never. With this in mind, we have provisionally booked a date of 28th August 2022 when I will fly out to Mexico for 28 days to receive treatment. The cost is around £45,000 and in addition I have to fund flights, a full time carer for the duration of my stay in Mexico and provide MRI scans. Provided the treatment goes well and I have no complications, I will be unable to work for at least 5 weeks and after that period I will still have to isolate and work from home which puts an extra financial burden on my family.

Every penny we can raise towards this treatment will help immensely. This is my only chance and I would like to thank anyone who reads my story as awareness for this cruel illness is vital for progression of research and any future treatments that may become available on the NHS. For me, there is no more time to wait. It really is now or never.