A group of marathon runners has raised the funds needed to set up a clinic for special needs children in their area – with remarkable results, writes GORDON DEEGAN
A FEW MONTHS ago, three-and-a-half-year-old Co Clare boy Adam Quirke confounded expectations by taking his first steps.
Adam has Down syndrome and his mother, Noelle, says: “The doctors didn’t think Adam would have been walking at that stage.
“He started walking in May and when he came back to play school last month, he was practically running into the school – his teacher couldn’t believe it.”
Noelle attributes Adam’s rapid progress to the intensive therapies he has been receiving at the Clare Crusaders’ Clinic outside Ennis. “If it wasn’t for the clinic, Adam would have been struggling. It has been wonderful and amazing for him,” she says.
Adam is one of three special needs children who have learned to walk earlier than anticipated through the continual therapies received at the clinic.
The clinic – with now 120 children on its books – is an outlier in the Irish health system: it is run by parents with special needs children on a voluntary basis, all of its services are free and it receives no State funding.
Also, any new clients receive therapy within one week of making contact with the clinic and its operation relies solely on fundraising, principally through sponsorship raised by a group of local marathon runners.
Ennis couple Howard and Grainne Flannery hit on the notion of a local clinic on a journey back from Dublin to Ennis four years ago after coming away from hospital where they were told their then toddler son, Conor, had cerebral palsy.
Grainne says: “I remember driving down and we were just determined that Conor would get every goddam chance he could and not just that, but every local parent and child behind us would get the same chance.”
The mother of four young children adds: “Both of us got so angry. You couldn’t get any information. We were lost. We were told that the younger they are, the better chance they have.
“But then we started to figure out that if the children can’t get a diagnosis in this country before the age of two due to waiting lists, they can’t figure out where to go.
“So Howard and I were thinking, ‘We need our own clinic in Clare, we just do’, and nobody should have to walk the journey we walked. Nobody.”
The two met two other parents of special needs children in Ennis, Ann Norton and Frank Cassidy – Ann would organise therapies and eventually a clinic, and Howard and Frank would start running marathons to raise money for the children.
Settling on the name the “Clare Crusaders” in 2005, Howard and Frank persuaded a group of friends – who had never run any distance before, but had lots of weight to lose – to take part in the Dublin city marathon.
The runners raised enough money to employ one therapist and therapies were being given initially from two rooms in an Ennis house.
The number swelled to more than 30 runners in the 2006 marathon and Howard was already gearing up for a third marathon in June 2007 when aged 39, he was struck down and killed after a jeep crashed into him from behind while he was cycling on the hard-shoulder of a dual carriage-way near Ennis on a Sunday afternoon.
The Crusaders, wearing their Dublin city marathon medals around their necks, were just one group that packed into the St Peter and Paul Cathedral in Ennis for Howard’s funeral Mass as his loss was felt far beyond Ennis and his immediate family.
Five months later, more than 120 Crusaders turned out at the start line of the marathon, sporting black wristbands in honour of Howard’s memory, raising more funds that advanced the establishment of a clinic ever nearer.
Earlier this year, the clinic finally moved into its own premises in Barefield outside Ennis. Grainne admits: “The clinic is some legacy for Howard. He would be thrilled with it, absolutely over the moon with it, but this was the vision and dream he had. But it was never about him. He never took ownership of it. It’s all about the kids.”
All the time, their son Conor and other children were undergoing intensive therapies – speech, occupational and physio – from therapists employed by the Crusaders.
Grainne says: “It is unbelievable. The clinic has Conor talking, communicating, loving life, preparing him to go into Ennis national school.
“He started school there this September and is there with his three siblings, which for me, is a dream. Sitting up for Conor was a major achievement, rolling over was an achievement, crawling was ‘wow’, walking was ‘yipeeyiyea’, the first time he said a bad word was, ‘oh yeah’. They are all huge achievements.”
To date, the money raised by the Clare Crusaders – with the largest proportion raised by the runners – totals €789,000.
Over 70 runners, many of them first-timers, are preparing for this year’s marathon. On a recent Saturday, the group reached their peak in their training programme with a 21-mile run and the group’s orange shirts have become a familiar sight on the streets of Ennis.
Pat Bogue, who is marshalling the runners, says: “We get out of it so much more than what we put in. The pains and aches that linger after the long training runs serve as a reminder of what the children in the clinic have to face. However, the running pains are soon forgotten, but the children face these challenges daily.”
To date, €525,000 has been spent on the Crusaders’ project – the clinic costs €229,000 per annum to run, with €264,000 left in the bank.
The clinic today employs six therapists, one administrator and a number of volunteers, with the therapists providing 155 therapy hours per week.
A father of an eight-year-old autistic boy, Darragh, and veteran of three Dublin city marathons, Frank Cassidy, says: “Our plan for 2010 and 2011 is to maintain our current level of service in Clare, but this means raising €230,000 per year, which is a huge target in the current environment.
“The difference between the Clare Crusaders Clinic and the HSE is that the clinic is run as a private sector business. Every penny raised is managed carefully and 85 per cent is spent directly on salaries for therapists.”
He adds: “We recruit graduates who are eager and want to learn. Anne Norton makes sure that 90 per cent of their time is spent with children and not on administration/courses/meetings.”
Frank says: “Parents are directly involved in the success of the clinic and they understand that their efforts keep the clinic open.”
Frank is in training for his fourth Dublin city marathon with the Crusaders, while his wife Angela completed last year’s marathon and also this year’s first Crusader “Malin to Mizen Head Cycle” that raised €87,000.
Franks says: “The Crusaders clinic kick-started Darragh’s development which was stagnated with the HSE. This is where Howard felt that we had to do something ourselves.
“We always felt that for the kids to have any chance they needed to be bombarded with as many different therapies as possible.
“If nothing worked, then at least the parents knew they tried everything. Waiting for appointments with the HSE is soul-destroying for the parents.
“In Darragh’s case he has responded well to a variety of therapies and is doing very well at school and is chilled out. There is no quick fix with autism, so as long as Darragh is happy and moving forward, then that is fantastic.”
Dealing with the health system for over a decade – her daughter Nicole is 12 and has cerebral palsy – Anne Norton says: “The Crusaders came up from the realisation that there are no services for special needs children in Clare.”
Speaking at the Crusaders’ new six-room clinic, Anne says: “The parents are doing the Government a favour. We are looking after our children, we are providing the therapy for our children and we are up day and night with our children, and we have no back-up service from the HSE. I think it is an absolute disgrace. That is why the Clare Crusaders are here.”
Anne works 80 hours a week on a voluntary basis, organising the work schedules for the therapists and is the interface between the parents and the clinic.
She says: “For the children we are dealing with, the simplest little things are the biggest things – to see a child sit down and blow a bubble is an amazing thing. It could take a year to get a child to blow a bubble. We are not expecting miracles, the small things are what it is all about.”
Explaining the improvements achieved by the children, Anne says: “For a child to have one night’s sleep is actually progress for the children we are dealing with.
“Now the kids are sleeping better, they are not going into muscle spasms. They are not going through the pain they would have been going through because they wouldn’t have been getting the therapies that they needed.
“We would have had that problem, I would have been up and down to Nicole six times a night. That has all stopped with the therapies she is receiving.
“It is absolute heaven at the minute. I actually panic if Nicole wakes in the middle of the night at this stage because all I think, ‘Oh my God, are we going back to the way things were?’”
Prior to the Crusaders’ clinic being established, Anne’s search for improved therapies for Nicole took her overseas. She says: “We had no choice but to do this.”
Securing private therapies at the moment can cost parents between €70 and €150 per session.
Anne says: “If you don’t have the spare cash to do this, it is very frustrating for parents to know that these things are available, but you can’t fund them.
“A lot of parents are extremely frustrated and angry for not getting the services that they should be getting from the HSE.”
A HSE spokeswoman said the Clare children’s service at present provides therapy services for 220 children aged under six years, and 529 children aged between six and 18 years.
She said there are currently 23 clinicians in the specialist disability services in Clare.
“There has been a significant increase in both the number of clinicians employed and the amount of therapy delivered in recent years,” she said.
She pointed out that in 2004, the HSE had 8.15 clinical Whole Time Equivalents (WTE) in the Clare service and that has risen to 20.3 at present, an increase of 150 per cent
She added: “This has been a considerable investment in additional resources and has allowed us to move from single disciplinary working to multidisciplinary teams working in a coordinated way across multiple agencies. The result of these inputs has seen both a quantitative and qualitative improvement in the services that we provide.
“Despite the considerable increase in resource allocation and service delivery in the specialist disability services in recent years, the ever-increasing demand means that we are still challenged in our efforts to meet all of the needs.”
Howard’s brother Gordon, has this year established the “Kerry Crusaders” and his group will be joining the Clare Crusaders in this month’s Dublin city marathon with the aim of raising money for special needs children in Kerry.
Anne says she would love to see the Crusaders’ model copied across the State. She says: “I would love to think that it could be, but it demands an incredible level of commitment from the parents.
“There are lovely things happening here, but there are a lot of sad things happening, because the kids we are dealing with are very delicate, but if we can give them hope, that is fantastic, because that is what we are about.”
Grainne Flannery says: “The results at the clinic are magical, but it is desperate that it takes a charity to do this. It was ridiculous that the charity was set up at the height of the Celtic Tiger when money was supposedly there.
“It is thriving in a recession, but it is desperate that we have to fight harder than ever for money as there is a lot less to go around.
“We had a three week old referred to us recently because that is the dream – to get them really, really young and make the difference.
“Our hope is not to miss a Clare child with special needs, to keep making a difference and not have a parent out there thinking, ‘Oh my God, what am I going to do?”
