India

Wow what brilliant news I have.

Whilst constantly researching facilities around the world that treat MS with HSCT, I found India.

A new facility that has started taking patients. And a bonus of being cheaper, about £23,793.38 rather than the £39,655.63 it would cost for Russia. Which would of included several thousand every 6 months to get MRI’s for Russia, dashing around London for special visa’s. Not to mention hotel costs for anyone wanting to come out to see me whilst i was there for a month.

Now the protocol for India is the same near as, as King’s Hospital here in the UK and seeing I don’t fit their criteria this makes sense to find one that does.

It’s also a JCI-USA Accredited Hospital so you can image the weight that holds too.

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And so I have been given the date of 3rd of June 2017. So 6 months to find £20,000. no pressure.

So please please please spread the word, I need help and fast.

It’s getting real now, I’m excited, scared..

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Zip Wire pictures

We did it, Family and friends helped raise a few hundred pounds today and came and helped make the day fun.

Don’t mind the audio, you can’t take these people anywhere… yes Angela & Naomi….. 😀

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Most of us had never done a Zip Wire so it was a great experience for us all.

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Two people unfortunately couldn’t make it and so the lovely people at The Wire _ Chepstow said we could take those two places and go again……so I did. It was a brilliant experience made special by some amazing friends.

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Zippety doodah

Today is Zip Wire day – Photo’s later.

Apologies for not posting for a while, in between relapses and working hard with #Fabfudge, I’ve not had time to sit down and have a moment.

I am seriously burning the candle at both ends to keep everyone happy.

So today, I’m going to be doing a zip wire. Launching myself from a 70m high cliff edge and speeding along a 80m deep flooded quarry.

The Wire is one of the UK’s longest, tallest and fastest zip slides, running the 700 metre length of the NDAC Quarry.

Why… Because well I honestly don’t know. When you fund raise there isn’t a guide on how to do it.

When you are faced with a task to raise a lot of money, you make a list. What can you do, sell cakes? yes everyone does the bake sale, (you have to buy or plead to get those cakes.)

Media attention is great, a bigger audience to read about why you need money. But what if the media are not interested? Do something out of your comfort zone, ok well i’ll try the Zip-Wire (But that wasn’t enough for some – now i won’t name the media who didn’t seem at all interested in this, but are happy to watch me throw myself out of an aeroplane – nope not going to happen, i am terrified of heights i really am and to try and make me do that for attention is too much far, to much, not everyone is up for that – sorry i just can’t do it) – Also it’s expensive to throw yourself out of an aeroplane, a deposit of £50 then you need about another £300 ( I don’t have that kind of money) – oh you get people to sponsor you easy!!

It’s not easy if people don’t want to sponsor you. An example, my husband set up a page telling people about events linked to me, the zip wire being the first event. We all sent out this page, didn’t overly spam it – guess how much we raised………. £30 (so far) i cried, lots of people telling me oh get a page up I’ll sponsor you and then the usual radio silence that i am so used to. I would rather people said, sorry not interested or i don’t have spare money. As you notice i don’t really do sugar coating and would prefer honesty back.

I need the money yes, but i also don’t want to end up on a YouTube clip crying my eyes out with snot running down my face for all the world to laugh at.

So why do people want to see you humiliated, dragged through the streets of social media. When you are low and desperate. (yes i am) I’m not a blogger, I don’t know the first thing, I just write how i feel, husband then changes a few things because i am too blunt. I want to tell it like it is and how i am feeling but apparently you don’t do that.

I’m also not a cute kitten with a bad paw that needs medical treatment.

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Now this is Dave who at the time of this picture was 10 months old and had just started to go out roaming at night. He unfortunately got ran over, but the poor thing crawled back home with a smashed pelvis and dislocated front paw. I found him in the morning a soggy mess that i first didn’t recognise as our kitten Dave.

Husband and i rushed him to the vets who gently suggested he had a broken spine and to let him go…. to euthanase. Now this household love animals, 3 cats and a dog well you would wouldn’t you. Husband asked for x ray first to confirm this before we made such a huge decision. So glad we did as it turned out his spine wasn’t broken but his pelvis was smashed, his back legs were useless, dislocated front paw. Poor Dave was a mess, at this point he wasn’t in pain as the first thing the vets did was give him pain relief. My husband asked for Dave to be referred to Langford – one of the best veterinary centres in the country and only a few miles down the road.

Dave had extensive surgery over several weeks and several months of rehab. costs were about £5k We set up a webcam and a donation page for Dave people kindly donated about £500 the rest we are paying out of our own pocket. Dave has a limp, his back legs have a mind of their own, his spine suffered nerve damage and so if you ever meet Dave his tail has a life of it’s own and confuses the other cats.

But Dave was and is a fighter, an absolute cutie too.

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His fur has grown back now, but look at that adorable face.

Must go it’s breakfast time for the animals. Well the dog refuses to get out of bed it’s too cold, although he’s kicked us out. That cats have jumped on us waking us up far too early demanding food.

So I shall pop up the pictures later as long as there are none with me crying with snot running down my face.

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Save the Date

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.

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