by Mary-Anne McNulty
It's been an emotional year for Inishowen endurance runner Andrew Wallace. The Bridgend man put his body through the mill in March when he competed in 'the Race', a 24 hour event that saw him cycle, kayak, hill climb and run into the early hours.
He did it to raise funds for amyloidosis research, after the illness claimed the life of his mother Eileen, aged just 67, in 2015.
Recently, he revealed the fruits of his efforts to his immediate family, when he presented the Royal Free Hospital in London - the only place in Britain or Ireland currently specialising in the treatment of the disease - a cheque for an amazing 21,000 euros.
That amount in itself is impressive enough, but that total will be bigger still following the news that a benefactor has committed to doubling all amyloidosis donations made to the hospital.
Said Andrew: "It's only recently that the person came forward offering to double all funds, so thank God my timing was good - if I'd done it before we would have missed out!
"It was an emotional experience handing over the cheque. There was sadness there, because at the end of the day, mum's gone, and I can do nothing for her.
"But I can do something for other people, and if what I'm doing makes people sit up and take notice, then that can only be a good thing."
And the money, he insists, is only half the battle. Everything that he and his family have done - the race, the coffee mornings, the sponsor forms, the 'begging and borrowing' as he says, is as much to raise awareness as anything else.
"I've spoken to Professor Mark Pepys," he said, "who is a consultant at the Royal Free and who has singlehandely being doing amazing things in the field of amyloidosis treatment.
"He told me that only people from the west of Ireland visit the clinic, so the question is why does the other side of the country not contract this disease? Or maybe they just don’t get diagnosed. As he says 'its not a rare disease, just rarely diagnosed'.
"The most heartbreaking thing for us as a family is that we could have had mum for many years more if she'd been diagnosed sooner.
"That's why the awareness thing is so important to me. If every doctor's surgery in the country was more tuned to in the possibility that the patient might have the illness, then they would receive treatment sooner and their prognosis would be so much better."
Eileen is gone, but Andrew is determined to keep his campaign going - especially given the hurdles that medics like Mark Pepys face.
"A lot of it comes down to money and politics," said Andrew.
"Mark invented a revolutionary treament for amyloidosis, but the drug company that was developing it terminated the programme after divesting their entire rare disease portfolio.
"That was disappointing to hear, but there are a lot of positives too. A new form of medicine called "gene-silencing" has been approved for use by the NHS in England recently, and in time it's hoped it will reverse the effects of amyloidosis.
"Mark Pepys is a genius as far as I'm concerned, but nothing can be done without money, so more people like our family need to raise money and awareness.
"We were very proud to hand over that cheque, and there was a good bit of theatre too because none of my family knew what the final amount was until then.
“We will keep the faith with this disease. A lot of very positive stuff is happening right now but still the main issue is diagnosis.
"As Mark said, 'all doctors must think amyloidosis' when treating any patient - otherwise it's too late."
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