@transplant4phil
Donation protected
UPDATE:
Great news: Yes we got to £45k!!!
Now the bad news:
Thanks to Covid-19 the £-$ exchange rate has dived, so is now its £48k just for the treatment!! never mind the £6k for a carer, tests, medication, travel and expenses, so we have reluctantly had to increase our target to £51k :-(
I was scheduled to go to Mexico in a few weeks but all cancelled due to many factors, so we have now postponed to August till the madness settles down.
ALL DONATIONS COUNT AND PLEASE DONT STOP GIVING - Anything more raised than we need to pay for the treatment and associated costs (as its more than we thought!), will be given to the AIMS charity (https://www.aimscharity.org/ ) to help others in Phil's situation.
----------------------------------------------------------
Phil’s Story
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 initial £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, its 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.
My prognosis
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.
My Choices
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 Options
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.
Thanks,
Phil
Not convinced?
Some links to others whom had the treatment
· BBC’s Caroline Wyatt Reporter
https://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis
· Hollywood Actress Selma Blair
https://multiplesclerosisjourney.com/2019/09/high-profile-actress-with-ms-spotlights-drastic-stem-cell-treatment/
· Jack Osbourne (The TV star and Ozzy & Sharron Osbourne’s son)
https://www.everydayhealth.com/multiple-sclerosis/living-with/jack-osbourne-dont-let-ms-control-your-life/
----------------------------------------------------------------------------------------------------------------------------------------------------------
Alison’s Story
I met my husband over 5 years ago and he’d had the illness for 10 years. I researched the disease but with some degree of naivety. Most of the time Phil appeared to be fine. He was running his own company and he enjoyed holidays and socialising. Before his illness, Phil enjoyed walking and loved climbing peaks around the UK. Phil would love to join his mates on those walks today. He would love to kick a football with his 2 young sons. Phil would love to take a walk with me whilst holding my hand or go for a run, but sadly those days are in the past.
Today, Phil is lucky enough to work from home. Most days he doesn’t go out the door, it’s too much effort, he explains, it’s like walking through mud. He can just walk in the house using the furniture for stability, walking sticks or a rollator. He has regular physiotherapy & massage to help with muscle stiffness and mobility. He uses a scooter when he is outside. If he gets too hot, he loses strength and can’t function (it’s a condition called Uhtoff’s syndrome). He loses his balance and falls regularly. It scares me that it will only be a matter of time before he is seriously injured.
This is a small snapshot of Phil's day to day life. Find out more about MS symptoms, of which Phil suffers from some, but not all of them, at least not yet – take a look at this link: https://www.nhs.uk/conditions/multiple-sclerosis/symptoms/
How would you feel if you had this condition? How would you feel if you knew that there was a treatment out there available on the NHS? And that this treatment would at least halt the advancing disability? But you’re told you have the wrong type of MS. They say you’ve had the illness too long or because you’re not having regular relapses it’s not available to you. The criteria in the UK is so strict for the treatment and is only available to few.
The Answer
There is hope for Phil – the good news is that the treatment is available in top certified clinics in Mexico and Russia. It's called 'HSCT', which stands for 'hematopoietic stem cell transplantation'. This specialised treatment attempts to reboot the immune system. It is chemotherapy-based and quite a harsh treatment. It works first by removing your immune system. It then reboots it using stem cells harvested from your own blood or bone marrow. Almost 700 people have already received the treatment in Mexico alone. BBC News Correspondent Caroline Wyatt is one of them:
https://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis
The treatment has had many positive results in stopping MS but it comes at a price: £45,000. This cost covers the initial stem cell transplant treatment and carer, however may increase as we know more.
This is the price of hope. With your donation we can help get Phil to Mexico or Russia and stop this dreadful disease in its tracks. We are working hard to raise this as quickly as possible. As with every day that passes Phil’s health is deteriorating more and more.
Thank you. I’m happy to answer any questions.
Need more convincing? Take a look at:
www.ncbi.nlm.nih.gov/m/pubmed/31599815/
https://www.hsctmexico.com/
https://hsct-russia.com/
Great news: Yes we got to £45k!!!
Now the bad news:
Thanks to Covid-19 the £-$ exchange rate has dived, so is now its £48k just for the treatment!! never mind the £6k for a carer, tests, medication, travel and expenses, so we have reluctantly had to increase our target to £51k :-(
I was scheduled to go to Mexico in a few weeks but all cancelled due to many factors, so we have now postponed to August till the madness settles down.
ALL DONATIONS COUNT AND PLEASE DONT STOP GIVING - Anything more raised than we need to pay for the treatment and associated costs (as its more than we thought!), will be given to the AIMS charity (https://www.aimscharity.org/ ) to help others in Phil's situation.
----------------------------------------------------------
Phil’s Story
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 initial £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, its 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.
My prognosis
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.
My Choices
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 Options
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.
Thanks,
Phil
Not convinced?
Some links to others whom had the treatment
· BBC’s Caroline Wyatt Reporter
https://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis
· Hollywood Actress Selma Blair
https://multiplesclerosisjourney.com/2019/09/high-profile-actress-with-ms-spotlights-drastic-stem-cell-treatment/
· Jack Osbourne (The TV star and Ozzy & Sharron Osbourne’s son)
https://www.everydayhealth.com/multiple-sclerosis/living-with/jack-osbourne-dont-let-ms-control-your-life/
----------------------------------------------------------------------------------------------------------------------------------------------------------
Alison’s Story
I met my husband over 5 years ago and he’d had the illness for 10 years. I researched the disease but with some degree of naivety. Most of the time Phil appeared to be fine. He was running his own company and he enjoyed holidays and socialising. Before his illness, Phil enjoyed walking and loved climbing peaks around the UK. Phil would love to join his mates on those walks today. He would love to kick a football with his 2 young sons. Phil would love to take a walk with me whilst holding my hand or go for a run, but sadly those days are in the past.
Today, Phil is lucky enough to work from home. Most days he doesn’t go out the door, it’s too much effort, he explains, it’s like walking through mud. He can just walk in the house using the furniture for stability, walking sticks or a rollator. He has regular physiotherapy & massage to help with muscle stiffness and mobility. He uses a scooter when he is outside. If he gets too hot, he loses strength and can’t function (it’s a condition called Uhtoff’s syndrome). He loses his balance and falls regularly. It scares me that it will only be a matter of time before he is seriously injured.
This is a small snapshot of Phil's day to day life. Find out more about MS symptoms, of which Phil suffers from some, but not all of them, at least not yet – take a look at this link: https://www.nhs.uk/conditions/multiple-sclerosis/symptoms/
How would you feel if you had this condition? How would you feel if you knew that there was a treatment out there available on the NHS? And that this treatment would at least halt the advancing disability? But you’re told you have the wrong type of MS. They say you’ve had the illness too long or because you’re not having regular relapses it’s not available to you. The criteria in the UK is so strict for the treatment and is only available to few.
The Answer
There is hope for Phil – the good news is that the treatment is available in top certified clinics in Mexico and Russia. It's called 'HSCT', which stands for 'hematopoietic stem cell transplantation'. This specialised treatment attempts to reboot the immune system. It is chemotherapy-based and quite a harsh treatment. It works first by removing your immune system. It then reboots it using stem cells harvested from your own blood or bone marrow. Almost 700 people have already received the treatment in Mexico alone. BBC News Correspondent Caroline Wyatt is one of them:
https://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis
The treatment has had many positive results in stopping MS but it comes at a price: £45,000. This cost covers the initial stem cell transplant treatment and carer, however may increase as we know more.
This is the price of hope. With your donation we can help get Phil to Mexico or Russia and stop this dreadful disease in its tracks. We are working hard to raise this as quickly as possible. As with every day that passes Phil’s health is deteriorating more and more.
Thank you. I’m happy to answer any questions.
Need more convincing? Take a look at:
www.ncbi.nlm.nih.gov/m/pubmed/31599815/
https://www.hsctmexico.com/
https://hsct-russia.com/
Organizer
Alison Swindin
Organizer
