Tony Ward was just 28 when he was told that he was going blind. In 1994 he was diagnosed with retinitis pigmentosa (RP), an inherited degenerative eye condition for which there is no treatment. In the intervening years he has completed five marathons and three long-distance cycles, and has represented Ireland in the European and World Athletic Championships.
“My sight would never have been great but it didn’t really impact on my day-to-day life. Then in my mid-20s it started getting worse,” Ward says.
“It was a very high anxiety time of my life because I was trying to cling on by my fingertips to exist in the sighted world.”
In 1994, Ward’s vision deteriorated to the point where he could not read. As a qualified chartered accountant, it had serious repercussions for his professional life.
“In 1994 I got my diagnosis which, to be honest, in light of the three or four years that had gone before, was actually a relief,” he says. “It was a shock to know that I had a condition that there was no treatment for and that was going to get progressively worse but, on the other hand, I now had a reason and I could explain it to people,” he says.
No longer being able to work as an accountant, Ward returned to his hometown in Monaghan.
“I decamped to the farm where I was extremely gainfully employed milking 40 cows and helping with the daily farm chores. For a couple of years I did wonder what the future would hold, but on the farm I had lots of things to do and I could do lots of things, and that was very rewarding.”
Fighting Blindness
An acquaintance encouraged him to attend the annual meeting of Fighting Blindness, the Irish patient-led organisation which supports people affected by vision loss and funds research into finding treatments.
“I’ve been involved with Fighting Blindness since then, as a member, on the board of directors and now, through an unplanned career sashay, I work as head of fundraising for Fighting Blindness.”
Ward had always been involved in sport as a child and teenager but, given the events that were taking place in his life in his 20s, sports fell by the wayside, until an unexpected occurrence gave him the nudge he needed.
“I was doing a course and at the beginning of the year, the tutor asked us to write down five things that we wanted to do, put the list in an envelope and give it to him. It could be anything from climbing Mount Everest to repainting the kitchen.
“The following March, when he handed back the envelopes, I realised that I had managed to do most of the things on the list but one of the things I had put down was ‘get involved in sport again’ and I hadn’t done that.”
He contacted Vision Sports Ireland (VSI), the national governing body for sport and leisure activities for vision impaired people. He joined VSI for athletics training the following Tuesday having never run competitively before. He went on to compete in the European Athletics Championships and the World Athletic Championships on six occasions.
Long-distance running
In 2004 he transitioned to long-distance running and ran the Paris Marathon. Since then he has run the Dublin City Marathon four times and will run the iconic New York City Marathon in November.
He has also taken part in three long-distance cycles, including two from Paris to Nice – a distance of almost 600 miles. Most recently he took part in the 400-mile cycle from Mizen to Malin, sponsored by the pharmaceutical company Bayer Healthcare, which set out to raise funds for Fighting Blindness and awareness of the issues of sight loss.
Right now, Ward is in the middle of a demanding training regimen for the New York marathon.
“Four or five mornings a week I’m up before 6am. I’m in the gym at 7am and I have my 10 miles done by 8.20am. Other days I squeeze in shorter runs at lunchtime.
“Now it’s about long runs getting longer. I’ve built up from 10 miles to 14 and 16 miles. About a month before the marathon I plan to do a couple of 20-mile runs.”
He does most of his training at the gym.
“Otherwise there would be far too many logistics involved. At least if it’s the treadmill, I don’t have to bother anyone or arrange to meet someone. It gives me more control over my training.
“At weekends I tend to go out and run with a guide. In the marathon I’ll run with a guide attached with a string and I may also have someone in front because with 40,000 people doing the New York marathon, it can get quite cluttered,” he explains.
Ward acknowledges the challenges in running a marathon as a visually impaired person. By his own admission, his obstinate personality and good support network are what have made it possible.
“People are very good and very helpful, if you ask for help. I’m lucky in that I’m stubborn and I have a great network of family and friends around me who row in behind my stubbornness and help me to do these things.”
Raising funds
Ward is using his New York Marathon run to raise funds for Fighting Blindness. It was through funding for Fighting Blindness that researchers in Trinity College Dublin identified the first gene involved in causing inherited conditions such as RP.
The finding was an international breakthrough. Since then, a further 200 implicated genes have been discovered. Many of these discoveries are now being examined with the hope of developing treatments.
But Ward is adamant he does not want to be seen as a hero. “The reason I run marathons and everything like that is because I want to. Sometimes you can get dragged into this heroic blind disabled champion category and that brings me out in a rash because, really, the reason I do this stuff is just because it floats my boat for some strange reason.”
He strongly recommends though that everyone should be mindful of their eye health and have their eyes checked regularly. Many of the common causes of vision loss, such as glaucoma, diabetic retinopathy and cataracts, are preventable and treatable if they are identified early, he says.
Today Ward’s vision continues to deteriorate. He can distinguish light from dark, but his central vision has all but disappeared. “There is nothing that can be done in terms of the genetically inherited forms of retinal degeneration, but there will be,” he says.
“I’m 49. I’m not devastated to think that there may not be a treatment in my lifetime, but for a kid born now with a retinal degenerative condition, I absolutely believe that there will be a treatment within their lifetime.”
To contribute to Tony's New York Marathon fundraising campaign for Fighting Blindness, visit give.everydayhero.com/ie/ tony-ward-new-york-marathon or contact Fighting Blindness at fundraising@fightingblindness.ie or on tel. 01-6789004.
