For 10 years Barretstown Camp has helped critically ill children have fun and believe in themselves, writes Sylvia Thompson
Children diagnosed with cancer now often face a lifetime of coping with uncertain survival whereas 10 years ago, the majority of them had a relatively brief time in which to adapt to the notion of dying.
"Survivorship is what it's all about now with up to 80 per cent of children successfully coming through treatment for these illnesses. For too long attention has been focused on the physical side of illness but the psychological impact can haunt children throughout their lives," says Terry Dignan, the programme director at Barretstown Gang Camp in Ballymore Eustace, Co Kildare which is celebrating its 10th anniversary this year.
The camp runs seven to 10 day long therapeutic recreational programmes for children with serious, life-threatening illnesses to give them opportunities to rebuild their self-confidence following sometimes gruelling treatment regimes. The children are selected by medical personnel in over 100 hospitals throughout Europe. Barretstown also runs family weekends and sibling programmes.
"The children are selected according to their ability to participate and the benefit they will gain from the experience," explains Mr Dignan.
Significantly, the non-medical staff at Barretstown don't know the children's illnesses. "This allows us to focus on the child and not on the illness. You would treat a child differently if you knew their illness," explains camp director, Ashling Farrell.
Barretstown does however have a fully equipped on-site medical centre if any child needs treatment while at camp. Known as the Med Shed, the centre is run by permanent and volunteer medical staff.
"The programmes here are psycho-social which means that they help increase the children's self esteem and self-confidence through co-operative fun activities which emphasise success and ability rather than disability. It's about challenging the children in subtle ways so that they can engage more with family and school afterwards," continues Mr Dignan.
Activities range from horse riding and canoeing to performing in a cabaret to cooking breakfast for the group you share a cottage with during camp.
"Studies have shown that anxiety about the future is significantly greater for children with serious life-threatening illnesses than for those with chronic illnesses such as diabetes so our role is to empower these children who have been disempowered through the experience of serious illness. The children themselves also inspire and support each other in ways no-one else can," says Mr Dignan.
A former camper now back working as a volunteer at Barretstown explains clearly the difference attending camp made to his life. "If I hadn't come to Barretstown, my life would have been so much more restricted," says Declan Noone (21). Growing up with haemophilia, Declan couldn't play sports and found it difficult to make friends. "I spent quite a bit of time on my own but coming here gave me the confidence to try new things," he adds.
With up to 23,000 new cases of childhood cancers diagnosed in Europe - 120 cases in Ireland - every year, Jenny Winter, chief executive of Barretstown is keenly aware of the need for places like Barretstown.
"It costs €4 million to run Barretstown every year and we are totally dependent on voluntary donations. In this 10th anniversary year, we are trying to make people aware of the seriousness of what we do. At the moment, we only serve a tiny percentage of children and there are a lot more children who could benefit from our camps."
Barretstown Gang Camp was founded by the American actor, Paul Newman in 1994. It became the first Hole in the Wall Gang Camp outside the United States. There are now others in France, Britain and Hungary.
Barretstown Castle itself, the converted stableyards and 500 acres of land are owned by the Irish state and rented to the charity for a peppercorn rent on a 99 year lease. Barretstown has grown from taking 124 children to camp in 1994 to an estimated 1,000 children this year. The first camp of 2004 begins this week.