Health

Monday 22 September 2014

Going for gold: From rare condition to champion

Helen Kearney thought her life was over when she was diagnosed with a rare degenerative condition at age 11, says Joy Orpen. Today, she's a member of the Irish Paralympic team, winning three medals in London 2012

Helen Kearney who rides horses for Ireland in the Paralympics with Mister Cool. Photo: Tony Gavin 20/03/2014

When Helen Kearney, 26, was diagnosed with a rare degenerative condition, she didn't give up on life. On the contrary – she looked at ways she could turn things around, and is now the very best in her chosen field, while bringing great glory to Ireland.

Helen was 11 years old when she was diagnosed with scoliosis, which is also known as curvature of the spine. She had two operations that lasted a gruelling 12 hours each.

As time went on, she developed a sore shoulder, so her mother, who is a GP in their home town of Dunlavin, Co Wicklow, took her to a physiotherapist, who picked up that "something was not right". So Helen was taken to a specialist, who diagnosed Friedreich's ataxia (FA).

According to Ataxia Ireland, this is a genetic, progressive disorder causing "clumsiness, difficulties with balance and lack of coordination".

Helen was stunned when the specialist talked about her future while living with FA.

"Everything was surreal," Helen recalls. "Anger, frustration and 'why me?' questions – I probably experienced them all. I remember thinking that, when I reached the point where I needed a wheelchair, my life would be over. It took me a long time to wrap my head around the disability."

Helen also recalls asking her mother if she would be able to have a family one day, but she says she wasn't enquiring for the obvious reasons. "I think I knew that I wasn't going to grow up and have the kind of normal life they have had. My initial feeling was one of great loss," she says.

Fortunately, Helen comes from a very loving family, and they absolutely supported her.

"Riding was the only sport that interested me," she says. "So my mam got me a pony – she wanted me to focus on living in the best way possible for me."

Helen was 13 and the pony, called Robin, proved to be a handful.

"He pushed me quite hard and, as I was still very inexperienced at the time, I learned an awful lot from him. I had him for over four years – he was my life," she says.

Helen's main focus back then was showjumping – mostly with The Pony Club. Then, when she was 17, Helen got Rascal. She was asked by another rider if she would be interested in para equestrian dressage.

"I said no – I just couldn't be bothered. But, when I saw how good she was doing dressage, I got hooked. By the time I did my Leaving, I knew that para equestrian dressage was for me.

To be honest, if there was a cure for FA, I'm not sure I'd go back to jumping – I really love dressage," Helen says.

When Helen was 19, she started a BComm at UCD.

By now, her dad had built stables and an arena for her next to their home in Wicklow. Helen says, when she joined Para Equestrian Ireland (PEI) in 2008, her disability was assessed and graded to "provide meaningful competition".

She has gone from strength to strength ever since. Her first competition was in England. "I won the prize for the best international rider. The whole experience inspired me," Helen says.

Since then, Helen has won prizes all over the place.

Because her coordination and balance have deteriorated in recent years, Helen was forced to begin using her very racy-looking wheelchair in a limited way. However, since she can still walk short distances, and has a driving licence, she is able to lead a really independent life.

It's just as well, given her very busy schedule. Prior to the 2012 Paralympics in London, Helen scoured all over the length and breadth of the UK looking for a first-class horse. Eventually, she found a grey gelding called Mister Cool – in nearby Co Cork.

And, although she had only been involved with the sport for four years, Helen won three medals – two individual and one team medal – riding Mister Cool. Horse Sport Ireland CEO, Damian McDonald, said Helen is an exceptional athlete, who has brought glory to Ireland.

"Winning three medals at the Paralympic Games in London was a phenomenal achievement.

"Helen is a determined competitor and she never stops looking at ways to improve," he says.

At the time of this interview, Helen was preparing to head to France to compete in an event that would help her qualify for the FEI World Equestrian Games, which are to be held in Normandy in August.

She got another horse, called Alfie, earlier this year, and hopes he will be ready for the 2016 Summer Paralympics to be held in Rio de Janeiro, Brazil.

When she travels, Helen takes a groom to help her, while the horses have their own passports. "We travel as a team," she says.

Helen volunteers that financing this sport is problematic.

"Funding is always tricky, but I do get some support," she says.

In the meantime, Helen has to make sure she has every aid possible to keep functioning at her optimum.

However, she is frequently disappointed by much of the equipment designed for people with disabilities.

"The tricky part is finding things to assist you – sticks just get in the way," she explains. "I started using a walker recently and I have a motorised scooter. But I've found I need to be constantly on the lookout for things that will help me."

Currently, Helen does dressage training with Mister Cool for about 40 minutes most days. She gets help with Alfie and is still in the very early stages of preparing him for the Paralympics.

As to her social life, Helen says it does suffer because of her huge involvement with riding, and because of her disability.

"I'm ambitious where the horses are concerned. I put a lot of time and energy into them and that curtails my social life," she admits. "But I love the horses and I have got so much out of competing that I don't regret any of it.

"I think my social life has also suffered because of my disability. It's hard to put yourself out there when you're disabled because you have an extra set of insecurities," she says. "Sometimes, you can't be bothered, but, when you push yourself, things happen. Just because it's hard doesn't mean you shouldn't try."

If anyone knows the truth of this, it has to be Helen, who has clearly put the limitations of her disability to the very back of her mind, and it seems nothing will stop this beautiful, elegant, amusing, highly intelligent and articulate young woman from achieving all of her goals. She is a real credit to Ireland.

Ataxia Ireland, 4 Leopardstown Business Centre, Ballyogan Ave, D18. For more information, tel: (01) 299-9033, or see www.ataxia.ie

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