No I’m not getting married.
Something equally important, I’ve been sent my date for Russia.
25th September 2017. Only 13 months to go. *Does a very feeble happy dance.
Things have become real, panic sets in, what lists do I make, I need to make them now
before I forget, What if this happens or that happens, what was the name of that company whatshername used? Do I need to take the doodah? (that’s a mind of someone with MS, overthink things, brain always buzzing away, never stopping)
But I have a great team of HSCT Veterans that can walk me through all what i need and where to get visa’s, best airline to take there and back, best place to buy face masks, hand gels etc.
What really worries me is that I have a long way to go to get the money needed for this, I really don’t know who to turn to, who is willing to help, are there secret organisations that would be willing to help someone like me? Charities for MS point blank refuse as unfortunately it’s a bit political. This treatment is available on the NHS and has been for a few years BUT you have to meet criteria s of having 2 relapses and failing 2 DMD’s (Disease Modifying Drugs) I’ve had more than 2 relapses and I have never been given DMD’s and by the time the criteria changes again, the damage will be beyond repair even for HSCT. Charities are now looking at HSCT with less contempt than they did, but they really won’t support it whilst the major part of their funding is from Pharmaceuticals. It’s a shame really that there is a large part of the community of MS sufferers that will have no help and support whilst they pursue HSCT.
So you can see where I am a bit stuck, without the help from charities in the UK funding is quite difficult. If someone can offer help or advice for me I am all ears.
I’ve set up a company called #FabFudge we have our website (see previous blog post) and it’s doing ok for a very small business, but lets be realistic, it may make a small dent in the remaining £48k I need to raise. the local press seem uninterested the last time I spoke. I need something to grab their attention I was told, well MS sufferer sets up small business to help pay towards life changing treatment isn’t good enough apparently. I’m supposed to do an event of some kind, Well I tried the Virtual run but only a small handful are dedicated to that. I’m not one for throwing myself out of an air plane (I’m supposed to save money not spend it in the hope to get more than £5 in sponsorship that i am sure of.)
With no super rich great Aunt or Uncle hidden away anywhere, and really bad luck on the lottery. My part time job just barely covers the bills…….
How do people raise vasts amounts of money, I you do know of companies that do want to help in these circumstances then please do pass on my name or show them my blog. I am doing my small bit with #Fabfudge but it’s not a great big corporate company yet 🙂
Please keep reading my blogs, please do share, HSCT has come out of the witches cauldron and into something NHS approves of. There are so many fabulous people that like me have lived with MS and decided to do something about it. There are so many success stories around the world. It’s no longer that subject we don’t talk about because it’s witch craft. NEWFLASH HSCT has come a very long way in it’s 35 years and improved immensely. Russia is the world class hospital to have the transplant.