Tuesday, May 05, 2015

Miracles in cramped spaces

It's hard not to come out of the renal unit in Temple Street Children's Hospital without tears in your eyes, writes Brian Byrne. Not out of pity for the children there, but for a feeling of personal inadequacy. In their situation I'm not sure that I'd be as brave and cheerful as they, and their parents, are.

With a group from the Punchestown Kidney Research Fund and friends of the charity, I spent a morning there recently to see where a chunk of the funds raised by the Fund through the annual Charity Race at Punchestown will be spent over the next few years. The visitors included a number of those who would be riding in the race last week, the 26th running of the event. They were among the latest group of 25 riders to bring sponsorship to a race that has so far raised €1.3m.

An initial donation of €150,000 from PKRF recently kick-started the fundraising for a €5m outpatients facility at the Hospital, where children can come from all over the country for dialysis and other nephrology-related treatments in some kind of comfort — at the moment they're getting it in a very tiny and congested part of the 143-years-old old hospital.

Work on the new unit has already started and it's hoped it will be in operation this time next year. But as I write, not a cent of the money needed is scheduled to come from the state.

"We're hoping to provide another tranche of money next year," says James Nolan of Kilcullen, founder of the PKRF and who himself had a kidney transplant more than two decades ago, donated by his sister Catherine. "This is the biggest project we have ever supported, and I feel very strongly about it because I have so personally been involved in kidney failure and organ donation for most of my life."

Out of well over a hundred applications, the final panel of 30 for last Saturday's Charity Race were selected. Five of those were to be disappointed, as only 25 riders can take part, but they were all ready in case there's a withdrawal of any horse and rider for any of the many reasons that can result in this.

Among those at Temple Street was Glen Norris from Dungarvan, a well-known jockey until he retired more than a decade ago. He still rides out every day, and he has been in serious training for the last year to fulfil a long-held ambition to take in the race. "I've lost a stone and a half in the year, even though I was already a lightweight," he says. "Initially it was for a personal ambition, but I love kids, and now it's very much for them that I'm doing it."

Kids like Laura Doyle from County Longford, a regular out-patient at Temple Street who has had a kidney transplant. She met up with and totally charmed Glen in a narrow corridor of the hospital. He showed her the horse he'd be riding, and she extracted a promise that she and her parents would be brought to Punchestown to see the race and the horse.

Then there was Aimee Louise Fenton, aged 12, from Midleton, Co Cork, who leaves her home at 6am three times a week for dialysis at Temple Street. Apart from the journey there and back she spends four hours at a time being dialysed. Aimee Louise has been a kidney patient since her first week of life, and though she did have a successful transplant for a number of years, she's now back on the machine and waiting for another organ. Paul Fahey, who won the Charity Race back in 2014, gave Aimee Louise the chance to name one of his horses.

One of the really good news opportunities was the chance to chat with Ben Kelly from Gorey in Wexford. He'd had his second transplant only two days before and was already feeling ready to rock and roll.

The gift from the Charity Race fund was warmly welcomed by the hospital's CEO Denise Fitzgerald. "This new outpatients' facility is not a luxury, it's long overdue," she said. "At the moment we're in the position that patient conferences often have to be held in the corridors, we're so tight for space." Thanking the representatives of the riders, she said that 'when you are riding next week, the money raised does something incredibly spectacular'. "To show that, we're going to have a Nurses Station dedicated to you in the hospital."

About a million and a half children are expected to come through the Temple Street doors in the next 10 years, a tentative timeframe before anyone there expects that the much delayed new National Children's Hospital will actually appear. They will be coming for treatment in one or other of the seven major paedriatic specialities the Hospital provides for. Among these is the Nephrology Unit, dealing with all aspects of kidney ailments. Since 2003 all paediatric kidney transplants are done there, and more than a hundred have now been carried in Temple Street.

For those waiting for organ transplant, there are two options. Travelling to the Hospital three or four days a week, or home dialysis where that's suitable. There's a 13-week training course for parents for this, carried out in Beaumont Hospital, and the PKRF is the main sponsor of this programme.

Other projects which the charity helps to fund include a nephrology study into Vitamin D, as kidney patients can suffer from calcium deficiency and are subject to bone breakages. A study into the genetic factors that contribute to renal failure is also supported by PKRF. Art therapy for adults attending dialysis in Tallaght and Waterford hospitals has also been funded, and an auction of patients' artwork last year in Waterford resulted in the purchase of a large TV for the Dialysis Unit there.

During the visit to Temple Street, James Nolan thanked all those who have been involved over the years, including Diageo who sponsored the race up to last year 'and they are still involved in a big way supporting us in the background'. The Turf Club, Punchestown Racecourse, and Horse Racing Ireland are also heavily involved.

Also with the group was Kildare South TD Martin Heydon, a longtime supporter of PKRF. He has his own personal interest in the issue, having lost a kidney himself at the age of 18.

(A version of this story was first published in The Kildare Nationalist.)