Current Good Cause
What could be a better cause than this:
(You can also see the video on Phil’s GoFundMe page.)
I need everyone’s help to get a transplant and halt my increasing disability! All other avenues have failed so I’m left with only one option, to fundraise the £45k I need for private treatment.
Some of you know and most don’t, I was diagnosed with Multiple Sclerosis (MS) in 2004. Living with MS is constant & terrifying, as you just get more and more disabled and whatever you do very little can be done. MS is lifelong; has no cure; is not contagious and everyone with it is different.
Orignally – Invisible Disability
For me this is the worse part. For many years it’s been an invisible disability and so only I know it’s their constantly and unseen. This is the worse bit as people look at you and think there is nothing wrong. To have to justify yourself every time to colleagues, friends and family, and you can see the doubt in their faces, this puts you as such a low. My MS symptoms have fluctuated and reared its ugly head at the most inappropriate times and limited my normal physical or mental ability. It’s caused major hidden problems in mobility, mental health, energy levels and so many other symptoms. It’s been a major unseen factor in so many of my major life decisions which has caused many to question and comment what they see as irrational behaviour.
Now – Visible Disability
Because of the condition continually spiralling downhill, it moved to a visible disability. This to me is partly a good thing as I don’t have to justify myself. Being visible with multiple aids (walking frames, mobility scooter etc) means I try to live as normal life as possible and it’s so expensive being disabled, this is where most of my cash goes. Because a symptom mean I have little energy, I have relied for last couple of years on redbull (Lidl / Aldi cheaper equivalent) to give me a short boost so I can do little things. Just getting out of bed I struggle to do, without a can of an energy drink first. The worse is I can’t even walk 1m now without a stick or something to hold on to and will trip over anything or just nothing. Because I have little balance this causes me to fall hard regularly. I’ve lost count of the bruises and damage I’ve done. I should be in a wheelchair or powerchair, but it’s a huge mental step for me which without this treatment I will need to accept in the next few months.
Is just to get worse and there is nothing the NHS can, or will do to improve things for me. So I will only get worse and worse. Eventually losing my ability to move, think, speak, see, everything people take for granted. To be honest I would rather not be here, than be a major burden on others.
I long to do simple things like doing things with my kids, playing football or going for a walk but its out of the question. I wish to support them growing up, especially after my daughter lost her mum a few years back, I should be there to walk her down the aisle, but I don’t want anyone to see me if I’m a dribbling mess in the corner.
Now the good news
There is some hope in a treatment outside the UK, which may halt MS my disability and symptoms and keep me the same as I am now. Its commonly known as a bone marrow transplant, or aHSCT. It’s painful and risky with being 85% effective with a 0.3% mortality rate. It will become a mainstream NHS treatment for MS in the next few years however this will be too late for me.
For years I’ve been trying to get this treatment and trying myself to raise the money needed.
· I started a company with the main aim of raising enough funds, however because of my MS getting worse, I couldn’t put in the effort and energy needed, so that failed.
· We have looked at loans and re-mortgaging however again because of my MS diagnosis, lenders don’t want to know or hike up interest rates making it unaffordable.
· Over the last few years I have been battling to get the treatment on the NHS, however this recently has failed as I don’t meet the NHS’s strict criteria.
I know it’s not going to be easy. It’s a simple choice of (1) do nothing and get more and more disabled or (2) do what I can and have this private treatment. I see number 2 as the only chance I have. I’m aware of the risks but know I must do it. It’s the same treatment for Leukaemia including the chemotherapy. I’ve been told it’s very hard and like doing 10 rounds with Mike Tyson.
My only option is to fundraise the £45k+ so I can have the treatment done privately in a recognised expert clinic abroad, where we know its been done successfully 1000’s of times.
It’s extremely rare that I ask for help but have to this time as it’s so serious. So please help in anyway you can, by coming up with ideas; giving up your time to fundraise or promoting my cause in any way you can.
You can support, like and follow my progress using the @transplant4phil on Facebook, twitter & Instagram.
I’m always happy to talk to anyone, so don’t hesitate if anyone has any questions.
Some links to others whom had the treatment
· BBC’s Caroline Wyatt Reporter
· Hollywood Actress Selma Blair
· Jack Osbourne (The TV star and Ozzy & Sharron Osbourne’s son)
You can donate to Phil’s GoFundMe page here, and of course, for every post made on the EthicalMuch platform we’ll be donating £1 to the cause. He’s nearly there, so let’s post away and send him off to get the treatment to give him a second chance.
JOIN EthicalMuch and £1 goes to Phil’s campaign.
POST on EthicalMuch and £1 goes to Phil’s campaign.