Hi all,

I’m reaching out with a humble request for help in what has been, and continues to be, the most difficult chapter of my life.

Four years ago, I was diagnosed with Stiff Person Syndrome, a rare and severely disabling neurological disorder that causes intense muscle stiffness, painful spasms, and progressive loss of mobility. It has literally brought my life to a standstill.

I am a father and husband, but I struggle to be there for my family in the way that I want to, because of this debilitating disease.

Muscle spasms can be so violent they can dislocate joints and even break bones. I haven’t torn or broken anything myself, but I can feel my symptoms getting worse as the years have gone on. The muscle stiffness and spasms affect my torso, back and legs and leave me immobile for sometimes hours at a time ( see pic). I have lost 15kg of weight in 3 years due to this disease.

I also suffer from chronic anxiety because of the unpredictable onset of my spasms, so it is difficult to even walk out of the house without taking a lot of anti-anxiety medication and muscle relaxers.

Despite trying multiple treatments, including medications to control symptoms, I am only just managing to get through each day. Unfortunately, my condition is still progressing, and I’m running out of effective options.

After a lot of research and consulting with specialists, I’ve learned about Hematopoietic Stem Cell Transplant (HSCT). HSCT has shown promising results in halting the progression of Stiff Person Syndrome and other autoimmune conditions. I am currently seeking treatment at Sheffield Hospital in the UK, but if I’m not accepted there, I will need to explore other hospitals abroad.

The financial burden of HSCT is overwhelming. Between the procedure itself, pre-treatment evaluations, travel, accommodation, and post-treatment care, the expenses quickly add up to tens of thousands of pounds. I have roughly estimated the costs below from the NHS Sheffield Teaching Hospital website:

£4500 - Detailed Assessment - This involves two joint consultations. A number of tests are required to inform the assessment, including MRI of the brain and spine with Gadolinium.

£60,500 – Treatment - This is done in two phases; stem cell harvesting and the subsequent stem cell transplantation.

£5000 - Further costs may need to be met I have a longer hospital stay and additional medical support.

I am determined not to let this disease define the rest of my life. I want to regain my health, independence, and hope for the future — but I can’t do this alone. If you can, please consider making a donation to help me access this life-changing treatment. Every single contribution — no matter the size — brings me closer to healing. If you are unable to donate, simply sharing this page with others can make an enormous difference. If for any reason I am unable to go ahead with the procedure, I will be returning all of the funds.

From the bottom of my heart, thank you for taking the time to read my story and for standing with me in this fight. Your kindness and support mean everything.

Many thanks,

Mo