Hello, my name is Mark Gilligan. I am a 54-year-old Irish musician. In 2003 I was diagnosed with multiple sclerosis (remittance relapsing form). As time progressed it worsened, and I am now in the secondary progressive stage of the disease. I have basically lost the use of my whole left-hand side of my body. My hand (I´m left-handed) and leg don´t function properly. So, I can´t play music anymore which is a right pain as you can imagine. I was a clarinet player since I was 13. But never mind that, it is the stupid little daily things that we don´t even give a second thought to like tying shoelaces or buttering a slice of bread to shaving yourself or brushing your teeth. And I haven´t even started to dress myself yet. Trying to put my socks on with one hand. That gets me most frustrated as does having to ask my wife (Willemiek and our kids (Tristan 20 & Orla 16) to open a bag of crisps or cut my beef burger up into ¨little soldiers¨. Shortly our son Tristan will be moving out to study. As a father you’d be the first to help him out by moving his stuff, painting etc. But this father won´t be able to do any of this and realistically will have to look at photos because I can´t climb stairs to see his place.
The last 2 months I spent in rehabilitation learning how to fall safely because I fall a lot tripping over rugs & door saddles or just losing my balance. I have kind of got to the stage of my life where my world is getting smaller and smaller and MS is progressing at a rapid rate. In a kind of a way I am very lucky that I don´t get depressed and always seem to find a manageable solution when MS throws you a curve. It´s hard at times accepting how aggressive MS can be especially in the secondary progressive stage. Once you´ve lost the use of as in my case the left-hand side the chances are it won't come back. Until now.....
Here in The Netherlands where I live there is very little they can do medically and as my neurologist said to me about 3 years ago that my rehabilitation doctor is my new best friend. However recently I met a doctor, a GP who also had secondary progressive MS, who had a procedure called HSCT done nearly 2 years ago. MS has stopped progressing and he has a huge improvement in his lifestyle. His recommendation was for me to get this done yesterday and not next week. HSCT attempts to “reboot” the immune system, which is responsible for damaging the brain and spinal cord in MS. This treatment has shown very positive results in stopping MS in its tracks. This treatment is not available in The Netherlands and because it is considered to be at an experimental stage, and it is not covered by my health insurance. It comes with a price tag. It is recommended that I get this done at The A.A. Maximov Department of Hematology and Cellular Therapy in Moscow. In total this costs 75.000 euros. This will cover the stem cell transplant treatment, carer, all medical costs incurred, aftercare and travel costs.
This is why I am starting a crowd funding campaign to get this treatment done. Since that day back in 2003 when I was first diagnosed with MS, I called it ¨The lodger inside of me¨ and I think it has overstayed its welcome and needs to be evicted. If you were to see me today, you’d be going ¨Ah jaysis the poor auld unfortunate¨.... But I don´t see it that way and if the is a sniff of a chance that I can evict the lodger I´m doing it. I accept the way I am now, but I must stop its progression. Period. Could you imagine Willemiek, Tristan & Orla having a Daddy who can hang out with them & have fun without thinking oh will Mark be able for this.
Will you donate today and help set me on my journey to halt MS. I intend to keep a weekly video blog to keep you all updated on this extreme trip of a lifetime. I intend to keep a weekly video blog and other fun things to keep you all updated on this extreme trip of a lifetime. I'll be tweeting #evictmarksms. I'll be Facebooking, etc. I have an email address if anyone wants to contact me [email redacted]
Amazinly I started my stem cell transplant in Moscow on the 19th Febuary 2020 and spent a total of 32 days in hospital there. On returning to The Netherlands I spent 2 and a half months in solitary confinment in a nursing home. Today I am 9 months post HSCT and it is unbelievable what I have achieved. Folks this has stopped the progression of MS in its tracks. The bonus is I can walk, write, drive, shower, shave, dress myself, cut and butter the bread. You think thats good? Well guess what? Tristan & Orla got their Daddy back and Willemiek got her husband back. And me well I got control of my life back.............
That's my story. I want to thank each one of you for your endless support and encouragement. I can't thank you enough.
I have set up a new bank account for the sole purpose of this medical funding if you prefer to donate direct.
Account name: M.C. Gilligan
- Linda Storey
- Lisette Boot
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