Help Spiroflow & Amie beat MS with HSCT

Hello all,

Spiroflow employees are getting together and running 5km, 10km or a half marathon to fundraise for an employees siblings good cause.

Amie Park is a local girl who is fundraising for a treatment for Multiple Sclerosis. Here’s her story:

Hi everyone, my name is Amie and I am here to humbly ask for your help to raise the funds for a life-changing medical treatment. Last year my health and life turned upside down overnight and, after 7 months of struggling with debilitating symptoms and persisting to get answers, in January I got the devastating diagnosis that I have Multiple Sclerosis.

MS is a progressive autoimmune disease that manifests as neurological symptoms in 'relapses' which can be anything from neuropathic pain, sensory disturbances such as numbness, weakness/heaviness of limbs, loss of coordination/balance and, devastatingly; loss of mobility, motor function, vision and many other awful outcomes. This is all caused by a 'defect' in my immune system which is overactive and mistakenly attacking/damaging the coating of the nerves around my brain and central nervous system. No two peoples case of MS is the same. Unfortunately, I have a 'highly active' case, because I have already had more than 2 relapses in a single year and have 'numerous' active lesions of nerve damage.

After such a life-shattering diagnosis, I finally felt HOPE for my health and future again when I discovered that a treatment DOES exist that has been proven to completely halt the progression of MS, put the disease into remission and can even improve and heal withstanding symptoms if done quickly enough! This treatment is called a 'Haematopoietic Stem Cell Transplantation' (HSCT) and is truly one-of-a-kind as it is the only treatment that goes after the root of the problem - the 'fault' in my immune system that is damaging my nervous system. It is an intensive chemotherapy based treatment, the aim of which is to stop the progressive damage MS causes by wiping out and then 'resetting' my immune system using stem cells from my own bone marrow. During recovery these cells then grow a new and improved immune system that will no longer be wanting to attack and damage my nervous system.

I have done countless hours of research on this treatment over the last 4 months including speaking to multiple specialists, through webinars with Professors who have spent the majority of their career being devoted to MS & HSCT and from speaking to so many people who have had this treatment and got their lives back because of it - HSCT really is my best chance to get my health and life back.

Despite already struggling so much with my symptoms, I do not qualify for HSCT on the NHS because they have set out extremely harsh and hard-to-meet criteria to get it. You must have tried and failed multiple medications over a long period of time and ultimately be disabled before they will even consider you for treatment - which is shocking and contradicts the very nature of when this treatment has been proven to have the highest rate of success; when it is done as soon as possible after diagnosis. The medications that are offered by the NHS are only designed to 'try' and 'slow' the progression of the disease yet they all have a high failure rate of doing so, awful side-effects, terrifying risk-profiles and, bottom line; they do nothing remotely like what HSCT does.

I am not prepared to wait, lose more of my health, dignity and risk irreversible disability occuring before this treatment would be authorised for me on the NHS when there are specialist clinics around the world who will perform HSCT for me. I am determined to improve the outlook for my life and future and that is why I am here, asking for your help to get me this treatment as soon as possible

I will need to travel to Mexico for HSCT at Clinica Ruiz, a specialist Haematology clinic where, to date, they have transplanted over 1,500 MS patients - under the care of one of the most highly accredited and experienced Haematologists in the world. The full treatment package costs $57,500 (USD) which converts to £45,250. This covers all tests, treatment and care for me over the 28 day treatment period.

One of the most terrifying elements of living with this condition is the unpredictability in which it can progress without warning. The threat of a relapse is constant and I wake up every morning and pray that I can still walk, use my limbs and see.

I have already lost almost a year and a half to this condition and it has affected every single part of my life. I am still only in my 20's and all I want is to feel free of this condition and be well enough to enjoy life again.

I will be eternally grateful for any and all help anyone can offer me to help make this possible. From the bottom of my heart, thank-you for your support, Amie x