Once a fit and healthy man, Chris Bogumil is now a shadow of his former self after being diagnosed with a progressive form of Multiple Sclerosis.
The determined dad tells AASMA DAY why he is planning to make a 5,000 mile trip to Mexico as a last resort to treat the condition.
“I feel destroyed, useless and surplus to requirements.”
Hanging his head in frustration, Chris Bogumil sums up his despondency at living with the condition that is slowly robbing him of all his abilities little by little.
But the dad-of-two possesses a steely determination which means he won’t give up until he has exhausted every option.
Chris, 56, who is married to Susan and has a daughter Amber, 15, and a son Aaron, 12, has Primary Progressive Multiple Sclerosis (MS), a condition which means he will gradually get weaker rather than being struck by sudden attacks.
Chris, a former postman who went on to become a gas and electric meter reader, was diagnosed with the condition around eight years ago and knows there is no cure.
However, he is desperately trying to find a drug that can halt or slow down the progression of the disease and has left no stone unturned in his mission.
But now Chris believes he has reached the end of the road in the UK and he is planning to embark on a 5,000 mile journey to Mexico for £35,000 stem cell treatment in a last ditch attempt to prolong his life.
Chris says: “My MS is getting worse and is spreading. It initially only affected my ankle and a bit of my leg.
“But now it has gone to both my legs, and my right arm is basically useless and my neck is going too.
“If things get much worse, I will end up being fed by tube and will suffer from respiratory problems and eventually die.
“I believe my only hope is going to Mexico.
“I have chased everyone I can in this country and even spoken to MPs, but I have had no joy.
“I have tried to get on various trials for MS drugs, but have been advised they were over-subscribed.
“I even travelled all the way down to Bristol and had blood tests in preparation for a trial and stayed in a hotel only to be told they weren’t ready to start it and, even when they were, they would only be taking on a small number of people.
“Time is running out for me and I have tried every other option and exhausted all avenues so the only option left is to go to Mexico for a cell stem transplant.”
Chris, who used to be very active doing karate and playing football, first experienced problems with foot drop and noticed his ankle didn’t seem to work properly and he kept tripping up.
However, he admits at first he tried to carry on as normal as he didn’t want to stop working and living his life to the full.
Chris recalls: “I had these symptoms for about two years, but tried to carry on.
“I used to look in the mirror every morning and tell myself: ‘Just one more day’ to steel myself up to keep going.”
Chris, originally from Ashton, Preston, then began visiting his GP on a regular basis, but says the doctor did not seem to take his symptoms seriously.
Chris remembers: “I seemed to be at the doctor’s all the time and I think he thought I was a hypochondriac.
“I asked him to refer me for a scan and he got angry and asked: ‘Are you trying to tell me how to do my job?’
“I told him no, I wasn’t, but I knew that something was seriously wrong.”
Chris changed doctors and his new doctor sent him to a neurologist.
An MRI scan revealed Chris had lesions on the brain – which is what Multiple Sclerosis is – and further investigations showed he had Primary Progressive MS.
Primary Progressive MS affects about 10 to 15 per cent of people diagnosed with Multiple Sclerosis.
MS is a disorder of the central nervous system, with most sufferers experiencing relapsing episodes which last days or weeks.
However, with Primary Progressive MS, it is progressive from the first (primary) symptoms. Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapses).
In Primary Progressive MS, early symptoms are often subtle problems with walking, which develop, often slowly, over time.
This type of MS is usually diagnosed in people in their forties or fifties – older than the average age for relapsing remitting MS – but it can be diagnosed earlier or later than this.
Chris feels that, as there is no cure for MS, doctors often write off people with the disease as they know nothing can be done.
However, Chris is willing to fight to try anything that will give him the chance of spending more time and quality of time with his family.
Chris has already forked out £5,000 for an operation in Bulgaria which he heard might help MS sufferers.
The surgery was similar to angioplasty in heart surgery where the veins are widened in certain areas.
The theory behind the operation was that MS is related to the blood flow in the brain and the build up of iron so Chris had the veins in his chest and on either side of his neck widened with the procedure. Unfortunately, it did not work in helping his condition.
Chris has also tried a trial drug to try to stop the MS getting worse, but his symptoms carried on deteriorating.
After numerous knock- backs in joining other trials, Chris is now planning to go to the Clinic Ruiz in Mexico in May for a haematopoietic stem cell transplantation.
Although it will not cure the MS, Chris is hopeful it may stop the condition getting any worse.
Chris explains: “During the cell stem transplant, they take your cells stems, get all the good ones and then totally destroy your own cells stems before putting the good ones back in again.
“I am in touch with people around the world who have had this treatment for Primary Progressive MS and they have reported it has made a difference.
“If this stem cell treatment manages to halt the MS from progressing, that will be a massive thing for me.
“But if it actually reverses some of the effects, that will be wonderful.”
Chris says that this treatment is not available in the UK as it is still at the trial stage for the more common form of MS. Chris says: “It will eventually come to people with Primary Progressive MS, but by then it will be too late for me.
“I cannot wait two, three, four or five years.
“I need to try this treatment now and am willing to put myself in debt rather than wait.”
The treatment in Mexico costs £35,000 and Chris will also have to pay for flights and a carer to go with him and will need to be out there for a month.
He is planning to fund the treatment through a mixture of personal savings, borrowing and fundraising.
Chris says: “I feel let down by the NHS system and this country.
“If this treatment works, it will actually save the NHS money.
“It costs around £30,00 for fitting an MS patient with a pump with drugs to try and stop spasms of MS.
“Just one year’s worth of drug money might save me.”
Chris says cases of suicide among people with MS are high as people know their condition is only going to go downhill.
However, he knows this is not an option he will consider as he wants to be with his family as long as possible.
Chris says: “I can’t do anything with my family and children any more.
“I haven’t been able to play football with my little lad since he was four and he is now almost 13.
“My daughter is 16 soon and is at college but I can’t drive her there or collect her or do anything.
“I am useless and surplus to requirements. I can’t do anything for my wife and children.
“I feel destroyed, but I have to keep going.
“At the end of the day, I am a husband and a dad and I have to keep trying.
“It is in my nature to never give up.
“MS is a progressive illness, so I always knew it was going to get worse.
“But I want to be around for my family as long as possible and I don’t want to be a burden.
“I am numb down my right-hand side and housebound and reliant on my wife.
“This is my last shot at life.
“Going to Mexico for this treatment is my best and last chance for a near normal life.
“After this, it is over and out.”
l Chris is fundraising on Youcaring.com. Visit: www.youcaring.com/christopher-bogumil-stem-cell-repair-mexico-506622