UPDATE

I have Had the treatment HOWEVER,

I am still asking for your kind help; I need £30000 to pay off the credit cards I took out to pay the excess to get the treatment .

My last MRI scan in April 2024 showed NEW lesions on my spine C2 & C3 and brain lesions!!!

HSCT treatment I received is to halt the progression of my Relapsing remitting Rapidly Evolving Multiple Sclerosis. I am the type of person that has always put others needs before my own. This is the most nerve-racking thing I’ve ever done and trust me; It is scary. Out of everything, asking strangers for generosity and kindness at any time, never mind in such a difficult economic climate, is number one THE MOST terrifying thing I have done to date.

I love volunteering for St John Ambulance, being part of an international running club the Hash House Harriers, and the travel it offers to the rest of the world. In addition to the wonderful people, I meet. I volunteered and was a disabled riding instructor in the USA and the UK.

I was diagnosed end of September 2022 with Multiple Sclerosis (MS) and I am not able to do what I used to do. With the pain, fatigue, etc I am already walking with sticks and while I am still able to participate in some "hash runs" on a bicycle or hobble slowly on my own. I hate that I can't partake in the Hash House Harriers fully. The hash has been a part of my life for over 20 years and it, and the people in the group bring me such joy.

The future looks bleak the progression to 10 is impending . My current EDS score is 6.5 as the chart above shows. There is a treatment that can stop/slow the progression, but it is not currently available on the NHS unless you are wheelchair bound and need a carer this will potentially halt my progression of MS as above in the photo cover. It is Hematopoietic stem cell transplantation (HSCT) and would require travel overseas. The only advice the NHS doctors gave me was to start crowdfunding, so that is what I am doing.

HSCT, is a one-time treatment and is far more sensible for both the patient and the NHS. According to the JAMA article, published in January 2019 by Dr Richard Burt, 98.1% of patients experienced no evidence of disease activity after six months of HSCT and 78.5% still showed no evidence of disease activity after 5 years. There are several places where a MS or other Auto-Immune patient can obtain HSCT. NOT IN THE UK! NOT ON THE NHS, unless you are at the extreme end and/or have been chosen to participate in a trial. HSCT Phase III study results for MS have been granted by the US Food and Drug Administration (FDA).

The UK believes health care for all, this treatment should be covered! it is currently available for people with advanced MS in the UK, but the biggest impact is on those in the earlier stages when halting the disease or reversing its impact can have a real impact on lives. For those left fundraising, they have one focus, to get better, but fundraising is a daunting and exhausting task. One day I hope that the NHS realise that adopting this treatment makes sense, not just for the patients, but for the health service itself. It is cost effective. Halting or reversing MS will save so much more in treatment costs and support for MS sufferers and their families.

MS can be triggered by infection and trauma, I had it all. Here is a little bit of history of how it happened to me. In May 2021 I was deliberately run over on the pavement by a motorcyclist who objected to my role as a covid vaccination volunteer. This resulted in a fragmented left talus, tibia, & fibula. I was non weight baring for 3 months and had plates and screws in my ankle. This was harrowing and traumatic enough, particularly as I did a half marathon the day before I was hit! Then one of screws in the ankle literally came out though my skin and I had to have emergency surgery in the hospital to remove everything. This was also extremely stressful and traumatic. While in the hospital, I contracted Corona Virus, and I was unwell for 3 weeks despite having been vaccinated multiple times. I know my body and I know when something is NOT right. I knew after my 3 weeks of covid in February 2022 that something was wrong with me. My GP knows I do not make a fuss and when told her I knew somethings was extremely off she acted straight away.

I was diagnosed with MS on the 29 Sept 2022 after extensive blood work (copious times), 2 MRI’s, 2 CT scans, X-rays, and a lumbar puncture.

I had hell of a lot happen to me in less than a year, the list is very long. I have done EXTENSIVE research, and looked at the NHS, MS trust, AIMS, the MS-UK, Shift MS, MS society, and other reputable sources. However, I am tired of explaining why I continue to need the sticks to walk, why my legs are wobbly (I am NOT drunk I have MS), why I fail with words, memory, or the easiest tasks, why my cat and I are on the same sleeping schedule.

I have been an athlete at a high level I was a training partner in the 2012 Olympics for Taekwondo. I ran marathons and triathlons and a high-level equestrian. All of that was cruelly taken away by this disease. I can still do some yoga, some cycling (limited) and I am slowly trying to swim again This treatment should enable me to at least continue to do all this, which I need this for my own sense of wellbeing. and be even half the person I was once before. And it; breaks my heart that I can't be me the way I was before how much stress I am putting on my partner and family.

Thank you for your support. As well as helping me I hope this will help to bring this treatment to the NHS.

Hope is the one thing that can get us through the darkest of times.

UPDATE*

COMPLETED TREATMENT BUT TOOK OUT 2 Credit Cards to pay excess NOT able to work full time.

Treatment was: 31 March 2024-27 April 2024

Breakdown of costs

• HSCT Treatment at Clinica Ruiz, Prebula Mexico $57,500 US Dollars

• Return flights for myself to Puebla Mexico airport £4683.19

• Travel Insurance £670 GBP

• Cost of caregiver while having treatment as I need one 24/7 with me is $2,750 USD

• Peso/cash to purchase essentials during treatment $600.00 USD

• bi-monthly infusions/injectios/vaccines upon return to £2,500.00GBP*

**TOTAL COSTS £55,459.19

*Exact cost of infusions/injectios/vaccines is yet to be confirmed

**conversions to GBP are approximate**

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