Help Sam fight MS with HSCT

Hi everyone, my name is Sam from Bristol, I'm a young Mum to a beautiful boy who is my absolute world, Harry. I really need help to raise funds for lifechanging treatment so I can be the best Mum I can for him.

In May 2021, my worst fear came to life and I was diagnosed with Multiple Sclerosis.

One Sunday morning I woke to sudden loss of vision in one eye. Over the course of the week I'd lost the ability to walk, my speech was slurred, I was being sick from dizziness. Something was seriously wrong. The next thing I knew I was in an ambulance with blue flashing lights being rushed to hospital with a suspected stroke.

A few days later after 2 MRI scans I was told this was an MS attack and I had multiple lesions on my brain which caused irreversible damage.

Since being diagnosed in 2021 I've never really gone into "remission" having bouts of attacks and new areas of inflammation on my brain and spine every few months. Subsequently, being diagnosed with rapidly evolving severe MS.

My Mum had MS, I knew from the day of diagnosis the fight I had infront of me. I watched my Mum suffer my whole life at the hands of this cruel disease. Mum started her first few years fairly stable but as the years went on, she became more disabled and more dependent on her children. She sadly passed in December aged 62 in a carehome where she spent her last few years of life. 

Unfortunately, even at just under 2 years into my own diagnosis, I have obtained a lot of permanent damage. I am very high on the disability scale for the length of time since diagnosis. With many others 10-15 years into their diagnosis not being at this level of disability. I am 4.5 on the "EDSS scale" meaning I am living with significant disability.

In October 2022 I started one of the most aggressive treatments available on the NHS for MS after the first drug I was on failed. I started on a drug called Ocrelizumab. Since starting this drug I've been more poorly than before. My disability has increased from 3.5 to 4.5 in 3 months, I've battled many side effects of the drug including severe bronchitis, sinusitis and tearing my muscles in between my ribs due to excessive coughing. It's made my life quality worse than before all in the hope to "slow" down my disease progression, which unfortunately has not worked. Its made my life an even bigger struggle.

HSCT HOPE

Fortunately, early into my diagnosis I came across a treatment called Haematopoietic Stem Cell Transplantation (HSCT). This treatment is the only one of its kind out there and the only one where the aim is to halt the disease in its tracks. This is an intense chemotherapy treatment (four chemotherapy infusions) aimed to stop the damage that MS causes by completely wiping out and regrowing my immune system using stem cells from my bone marrow. This treatment is 28 days long. HSCT has a success rate of around 85% of halting the disease progression, with some people seeing reversal of their disability. 

This treatment is extremely hard to get on the NHS even though it is proven that this a highly effective treatment at HALTING the disease with many people seeing improvements to their disability and quality of life.

For those of you that don’t know much about the disease. Multiple Sclerosis has no cure and is a lifelong condition that affects the nerves, spinal cord, and the brain. This happens when my own body’s immune system mistakenly attacks a healthy part of my body – in this case it damages and destroys the fatty substance that coats and protects my nerve fibres called the Myelin Sheath.

When the Myelin Sheath is being damaged by a faulty immune system this is where a relapse occurs, basically meaning anything from loss of vision, loss of mobility, loss of balance, loss of sensation and many, many more devastating outcomes. Once the Myelin Sheath has been damaged it cannot be repaired.

There are other treatments available out there but HSCT is the only one designed for halting the progression of the disease whereas ALL the other treatments are designed to slow the disease down which does not stop the inevitable....

The future terrifies me. I don't want to risk obtaining so much damage from further relapses and progression I am no longer able to enjoy my life at all or look after my son. I fear his childhood will look a lot like what mine did, if I don't do something!

MS is taking a toll on my life. I have to find the energy some days to get dressed, I suffer from excruciating nerve pain, muscle spasms, spasicity in my feet and legs, migraines, double vision, nystagmus, balance problems, cognitive problems, memory problems, bladder problems and a tremor in my hand, just to name a few. All of these are which already affecting my day to day life. I've spent time in hospital unable to wash, dress or go to the toilet by myself, having carers wash me and help me to the toilet in my 20s, I don't want to repeat this again in my 30s.

I will need to travel for this treatment to Mexico where I'll receive world class care at Clinica Ruiz. They have treated over 1,000 MS patients with a success rate of around 85% in halting the disease progression.

The treatment at Clinica Ruiz is $57,500 (USD) plus flights for me and my chosen carer.

Please help me with a second chance of life and a second chance of a healthy immune system. HSCT will give me a new immune system birthday which will hopefully forget that I have MS! This is a plea for help and believe me, it didn't come easy. 

Thank you so much for your help and support. Let's kick MS up the bum and show it what I'm made of! 

Thank you for taking the time to read, Sam x