Preston dad Chris Bogumil has a form of Multiple Sclerosis which keeps worsening rather than appearing as sudden attacks.
He tells Aasma Day why he is desperately fighting for a chance to try a drug which might hinder the progress of the disease.
When a horse starts limping and struggling to walk, most people think the kindest thing is to shoot it.
Smiling ruefully, Chris Bogumil says: “If I was a horse, they would have shot me by now.”
But ending it all is the last thing Chris wants, even though he knows the MS he suffers means he faces a cruel and helpless fate.
Chris, 54, who lives in Lostock Hall, near Preston, explains: “With Primary Progressive MS, your muscles get weaker and weaker, and reach a stage where you can’t breathe and have to be fed by tubes.
“Cases of suicide among people who have MS are very high, because people know they are staring at the inevitable.
“But because of my children, that is one route I do not want to take. I want to be here with them for as long as I can.
“I know MS cannot be beaten, there is no cure. But I am desperately trying to find something that will halt its progress.”
Chris, who is married to Susan and has daughter Amber, 14 and son Aaron, 10, was diagnosed with MS five years ago.
Chris, who was a gas and electric meter reader, explains: “I used to be fit as a fiddle – never stopped walking and I loved working.
“My symptoms started with a bad stomach, but doctors could not find anything, so told me it was Irritable Bowel Syndrome.
“Then I began having trouble walking, and my right ankle did not seem to work.
“I was sent to see a neurologist and an MRI scan showed I had lesions on the brain – which is what MS is.
“They then discovered I had Primary Progressive MS.”
Multiple sclerosis is a disorder of the central nervous system, and most sufferers have relapsing episodes which last days or weeks. However, some people with MS have symptoms that carry on gradually progressing without typical relapses – this is known as Primary Progressive Multiple Scelerosis (PPMS).
Chris says he feels doctors write off people with MS, as they know there is nothing that can be done.
However, Chris claims that if he does not fight to find a cure, or find something that hinders the disease, within a couple of years he will be bedridden.
So he is willing to try any treatment, and is ready to be a guinea pig for any drug that might give him a chance of a quality of life with his family.
Chris explains: “With medical trials, you are signing away your life, but I have nothing to lose.
“If I do nothing, I will end up in a nursing home or dead.
“I go to the hospital every six months for check-ups, but there is nothing they can do to stop the disease progressing.
“I have to fight my own corner, as no one else is going to do it for me.”
After being diagnosed, Chris tried steroid treatment, but it had no effect.
He then heard about an operation which may help MS sufferers, and he paid £5,000 to have the operation at a hospital in Sofia, Bulgaria.
Chris says: “It is an operation a bit like angioplasty which widens the veins in certain areas.
“The theory is that they think MS is related to the blood flow in the brain and the build up of iron.
“So I had the veins in my chest and either side of my neck widened using this procedure. Unfortunately, it did not make any difference.”
Chris then went on a trial drug, Ocrelizumab, which was to try to stop the MS progressing. However, despite taking the drug for nine months, Chris carried on deteriorating.
He is now trying to get on a drug called Gilenya, which has been approved for people with highly active relapsing remitting MS.
Chris says he found out the drug was being trialled at Salford Royal Hospital, and he sent off his details to try and get on the trial. However, he was told the trial had closed.
Chris says: “There are three trial sites in the UK for the whole of Europe for Gilenya, and I have tried to get on them all. But they are all closed to new enrolments.
“And in America, where they are further ahead, it does seem to be helping people with MS.
“However, the trial for using this drug for people with my form of MS will not end until November 2014. The data will then need to be evaluated and put to the National Institute for Clinical Excellence (NICE).
“So it could take about two years before the drug is approved, but this will be too late for me.”
A spokesman for Salford Royal NHS Foundation Trust, said: “Salford Royal hosts hundreds of trials each year, and in this case the trial sponsor was responsible for the number of patients required and the time in which they were recruited.
“Trials which are recruited to on a global scale are filled competitively, which means all countries compete for a fixed and limited number of places and this can sometimes mean the trial closes to new recruits earlier than expected.
“Unfortunately, this can leave people disappointed.”
Chris can barely walk and even getting to the front door is a struggle as he has to drag his leg behind him.
His right leg is effectively useles, his right arm simply does not work and his right hand is too weak to use. If he needs to walk, he has to use crutches, even for short distances.
Chris says: “I am losing muscle everywhere, but if the MS stopped and did not get any worse, I would be happy.
“I am not a greedy man. I am not expecting a cure. All I want is to know I will be here, and able to spend time with my children.”
Like many drugs, Gilenya has side effects and concerns were raised about the drug’s effects on the heart and there have been some deaths in people taking the treatment.
However, Chris says he is prepared to take the risks if it means giving him a chance.
He says: “I don’t have anything to lose. If I do nothing, I will just carry on deteriorating. It has robbed me of doing so much with my family. I used to be good at football and long to be able to play with my son.
“My wife is a real superstar and has been so supportive. She says: ‘It is what it is and we will deal with it together.’
“She and my children are what keeps me going.
“All I want is the chance to try this drug, which may change my life.”
Chris has a petition to get the issue raised by ministers to allow him to try the drug, and needs 100,000 signatures. Visit: www.you.38degrees.org.uk/petitions/drug-availability