A NORTHSIDE man who suffers from an incurable condition will attempt to raise awareness of the disorder through a fundraising event next month.
In January 2013, Barry Rice (34), from Ayrfield, was diagnosed with Friedreich’s Ataxia (FA), a neuromuscular disorder that causes progressive damage to the nervous system resulting in the loss of muscle control.
The condition primarily affects balance and coordination, but also has a wide range of symptoms – not all experienced by Barry – including loss of sight and hearing, slurred speech, physical deformities, diabetes and heart disorders.
According to Barry, around 250 people in Ireland have ataxia, and 150 of those have FA.
“The mean age of death of sufferers is 35, and there is currently no cure or treatment available,
? Barry told Northside People.
“I suffer from late-onset Friedreich’s Ataxia, meaning that at my stage of life I am more capable than most others with the condition.
“The words
‘lucky’ and ‘progressive neuromuscular disorder’ aren’t usually synonymous, but I do consider myself fortunate.
“Although I use a wheelchair when I need to walk further than about 100 metres, I must concentrate to speak coherently, and have difficulty with basic tasks such as tying my laces.
“However, I also have many things to be thankful for. I have a loving wife, Claire, and a beautiful daughter, Ellen (19 months), and we have another baby on the way in October.
“I have a caring and supportive family, and a great network of kind and compassionate friends. Many sufferers of Friedreich’s Ataxia never get the opportunity to get to my stage in life.
“You might see me pushing my wheelchair down the street and think me unfortunate, but I know truly unlucky people. Some Friedreich’s Ataxia sufferers, as young as age seven or eight, can’t push a wheelchair. Totally dependent on motorised chairs, they rely on constant assistance with basic tasks such as eating, washing and dressing.
“I know people so affected by FA that they lack the ability to speak, and must communicate through a Lightwriter, similar to that used by Professor Stephen Hawking.
?
Barry said that when he is in the company of such people, he almost feels a sense of guilt.
“Why am I so blessed to be able to do all these things that they cannot?
? he said.
“Why am I so lucky? I have decided to use my abilities, while I retain them, to do some good for the ataxia community.
“I have made it my goal to raise both funds and awareness for ataxia research and patient care. I intend to do so through a fundraising event called Cycle Ataxia, which I intend to hold annually.
?
The inaugural Cycle Ataxia, which will take place in Ashbourne on Sunday, August 10, will comprise three routes – 12km, 44km and 100km.
Barry is hoping that up to 500 cyclists will take part and is working closely with several clubs and Cycling Ireland to achieve that aim.
Three charities – Ataxia Ireland, the Friedreich’s Ataxia Research Alliance (FARA) and the Irish Wheelchair Association (IWA) – will benefit from the inaugural cycle.
While browsing the internet Barry found a group – Friedreich’s Ataxia Research Alliance (FARA) – dedicated to finding a cure for his condition.
“I discovered people with FA who were living life to its fullest, in defiance of their deteriorating conditions,
? he said.
“FARA’s ambassador, Kyle Bryant, was roughly my age, and like me, he suffered with late-onset Friedreich’s Ataxia. He cycled using a recumbent trike instead of a bicycle.
“Because the trike had a low centre of gravity and a bucket seat, he was able to ride it without difficulty. Due to my reduced mobility, I hadn’t engaged in any form of sports for years, but when I saw this trike I thought:
‘I could do that’.
?
Barry, who works in the family business, ShutterCo, duly purchased a second hand recumbent trike on the internet.
“My first cycle was just a couple of kilometres as I was very unfit,
? he said.
“But it was an exhilarating experience. It gave me a sense of freedom and achievement that I hadn’t felt in years. From that point on, I was hooked.
“Every time I’d go out, I’d go a little further. I lived in Raheny at the time and I would take it along the coast cycle path. Within a week, I was going to Sutton, then all the way to Howth. Then I was cycling around Howth Head.
?
Last summer Ataxia Ireland asked Barry to participate in the 2013 Dublin City Marathon on its behalf.
“I felt honoured to be asked and I was delighted to accept,
? he added.
“My next goal is to complete the 215km one-day cycle, from the Phoenix Park to Eyre Square in Galway.
“I hope to do this on August 2 as part of
‘Wheelz to the West’, a charity cycle in aid of the Irish Wheelchair Association.
?
Registration is now open for Barry Rice’s event at www.cycleataxia.ie or www.Facebook.com/CYCLEATAXIA