Reboot Me with HSCT
A few people wanted me to let them know when I would be paying the balance on my hospital treatment.
It was going to be the end of June, but as the ££ Pound is dropping against the $$ Dollar we may be bringing the date forward to very very soon, aka April (not an April Fools joke either)
So those that wanted to help, time is up help is needed now :) and a huge thank you to each and every one of you have have helped, look at what you have done.
Any money over will be going towards my antiviral drugs and physio for after to ensure all this was not a wasted life journey.
And after that... some news on it a little later but there is a NEW Charity from those with MS who have and will have HSCT, it's all getting exciting, I most certainly will be donating, #Fabfudge will be too, this is for the future generations who need the treatment, those that have it now are the ones who set things in stone, I am proud to be one of them.
A huge thank you to you all <3 your amazing , you have done something special, remember that.
wow just spent a few thousand pounds in a click of the mouse button. Deposit for my treatment has now been paid $2000 USD.
This secures my date for the treatment, only another $27000 to find by April. Not sure how that is going to happen, Been turned down for an extension on the mortgage, seriously wondering what are we going to do, we've scrimped back on everything. Heating only goes on when the duvets don't keep me warm. I always liked to be frugal, but this is becoming challenging. So glad we don't go and splurge at Christmas, so it's not going to be a disappointment that we don't splurge again this year. I've asked that no one buys presents or cards for me this year, instead donate what you would of spent on a present / card instead. firstname.lastname@example.org,uk (paypal) / or donate here. (charges apply)
Have a lovely Christmas everyone <3
Hi, my name is Jill.
I'm 46 years old and live in Bristol, UK.
I currently work part time, as I am unable to work full time owing to Multiple Sclerosis.
Prior to 2000, I was a happy mother of one going about my life without a care in the world, looking forward to raising my son and enjoying life being a parent.
How wrong was I?
Then I started to fall ill with muscle pains, memory problems & constant fatigue. The GPs were baffled and I was sent to various hospitals for blood tests, MRI scans, lumbar punctures, physio - always to be told that there was nothing wrong with me, I was just lazy.
Around 2003 I started to have problems with my eyes. Floaters started to appear and a year or so later I lost the sight in my left eye.
I watched as, section by section like a pie chart, the sight disappeared. I described this to the doctors at the eye hospital, who tested me with various optical devices which then printed out exactly what I had described. I was told then I had Posterior Uveitis, a rare form of Uveitis most associated with loss of vision.
The consultant told me that if my sight came back it would be a clear sign of MS. Fortunately the sight returned, but it then took until 2010 before a formal diagnosis of MS was given.
The type of MS I have is RRMS (Relapse-Remitting). Alas, I did not show the classic clinical signs which is why it took so long to diagnose.
I am raising money for HSCT ('bone marrow/stem cell transplant') which has about an 87% chance of halting my MS. I have chosen to undertake treatment in Russia, as HSCT is not available on the NHS - it is only in the experimental stage in the UK, but has been used as a standard treatment in Russia for ten years. Even so, the waiting list is two years long.
The money I'm trying to raise is for pre-treatment (MRI scans), treatment in Russia and follow up care & treatment here in the UK, all of which I will have to pay for.
I will donate any funds that remain to others needing this treatment and independent research into HSCT for MS too.
We have 2 years to make this happen. Please find it in your heart to help bring about a chance for me to live a normal life, that so far has been taken from me.
I have also a Amazon wish list to help with cost of making things to sell.
Fudge making for fund raising :)
From the moment I landed in India it all went wrong.
I was sexually assaulted by a wheelchair attendant, who then demanded I paid him, not knowing what to do or what to say, I handed over 1000 rupees, fortunately it was about £11, it could of been worse.
I really can't say too much about what happened for legal reasons right now, but the drugs to start the chemo were not there, 2 weeks of waiting and still nothing. I made the heartbreaking decision to leave.
I needed to get back home quick, get back to my family and feel safe again. I arrived home about 12 hours ago.
The HSCT community have been absolutely amazing and have rallied round to try and help one of their own (me) The is another facility that might be able to help me, my stem cells have already been harvested and are currently frozen in India. They are legally mine, but not something you can pack in a suitcase, they are still viable to be used for up to 6 months, but the sooner they are away from there and at another facility for me to use the better. We know I am a viable patient, I had a full medical, my records are still in India, I need to try and them all.
What now, well we are awaiting to see if I get a refund and how much, (if anything) as said another facility are happy to take me and continue but i need to pay for that, our pot is empty, I only raised £11k the rest was our house remortgaged, the bank now owns our home, I still need to pay that back. But now need to fight once more to raise more funds.
I need to you all to support me and spread my word. My world has been turned upside down, devastated, battle weary, empty, jet lagged.
Please help me finish my treatment, I'm half done, not knowing how to get to where i need to be.
Love you all.
I'm in India, currently going through pre-testing.
We will start mobilization at the weekend if I am a suitable candidate, signs are looking good.
Still urgently fund raising, I need a hematologist and physio for monitoring my progress safely when i return home.
Fundraising has been hard, it's a challenge.
We've had companies take money from us and not deliver (another story but one i will not drop).
I'm having to cancel Russia (again) That broke my heart, we revisited India and how that has changed (thankfully for the better)
I needed a carer to be with me over there, someone out there was listening to me, A carer was found, someone who has had his treatment in India last year, he is going from strength to strength enjoying life again.
Roll on September 16th, it's all booked, Visa all done, just about to book the flights. I've been patient, I've worked hard. I need this.
Thank you everyone who has donated so far, I still need help after, physio to learn to walk again. We also need to keep money aside, If I fall ill it will be an extra $2,000 a day. But this is my only option.
I even applied to Liverpool on the NHS, unfortunately they have just closed their books :(