Barretstown: What Paul Newman did for Saoirse, Kitty, Julie and Isaac

The Co Kildare camp was set up by a man who ‘wanted to help kids who were sick feel a bit normal’

In the early 1990s the actor Paul Newman was trying to find a European site for his Serious Fun network of holiday camps for sick children. His friend, Joe Woods, suggested the Barretstown estate in Co Kildare, which had been left to the government by the Weston family in 1977.

“The story has is that he initially said, ‘No way, Joe’. It rains all the time’,” says Dee Ahearn, chief executive of Barretstown. “So Joe said, ‘Look, you have to come meet them; the Irish government have been so supportive’.”

Paul took off from Heathrow where it was lashing rain, landed in Dublin Airport with the sun splitting the rocks and when he came down this avenue, he jumped out of the car and said, ‘This is it, Joe’.”

The Barretstown estate had been, at various points, a stud farm, the location for some Anglo-Irish talks and a proposed Taoiseach’s residence. Newman’s camp started there in 1994 and they worked, that year, with 124 very sick children. It was his first initiative outside of America.

Saoirse is clinging to Niamh's leg when we talk. She's doing much better now and has started back in senior infants. Two years ago, Saoirse could barely get out of bed

There are now around 30 institutions around the world providing Serious Fun programmes to sick children and their families, and many of the people providing those services were trained at Barretstown.

Newman got the idea after visiting a friend’s child in hospital, says Ahearn, “He wanted to help kids who were sick feel a bit normal.” He called it, she says, a place for sick kids “to kick back and raise a little hell.”

In 2019, Barretstown worked on-site or through its outreach programmes with 9,000 sick children and their families, and it aspires to help all families who need help by 2024 (the organisation estimates that there are 18,000 seriously sick children in Ireland).

They run week-long summer camp programmes for sick children, sibling weekends for their brothers and sisters and family weekends for whole families. They provide all of these services for free, getting 3 per cent of their budget from the State, with the rest coming from fundraising. Each year they’re aided by 2500 volunteers called “caras”. They tend to come back again and again.

Camp director John Mitchell himself first came here as a student volunteer around 17 years ago and never left. The caras are an uplifting presence, cheering families as they arrive and driving around on little buggies named after characters from the Paul Newman-starring animated movie Cars.

When Covid swept the world, they had to adjust what they did. With the help of donors they soundproofed rooms, procured camera equipment, trained their staff and began delivering programmes online. “I’ve never been so proud of how quickly the team were able to adapt,” says Ahearn.

Since June they've been welcoming families in person again. The day I visit there are 10 families. At lunch in the amphitheatre, as the families eat lunch, there's music playing and 6-year-old Saoirse Griffin is dancing with her 10-year-old sister Leah to the Back Street Boys.

Two years ago, Saoirse was diagnosed with leukaemia, was treated but relapsed and needed a bone marrow transplant. Her oldest sister, 12-year-old Alannah, was the donor. “She was amazingly brave,” says her mother Niamh when I catch up with them later.

What was that like? “It was fine,” says Alannah, a little shyly.

Was it scary? “No,” she says.

Saoirse is clinging to Niamh’s leg when we talk. She’s doing much better now and has started back in senior infants. Two years ago, Saoirse could barely get out of bed. “It was a long two years,” says Niamh.

Barretstown, she says, is “better than we ever imagined. You just forget all of your worries and relax … [Saoirse] was diagnosed in August 2019 and relapsed in may and we went for transplant last October. It was two years of massive stress and tension and away from the other two.

So me and Saoirse were in Crumlin 80 per cent of the time. To just come here the first time, especially with the medical support, it's just so important. It was the first time we could all come and relax. We just get to bond without having to worry about all the other stuff."

The medical support at Barretstown is crucial. Within the old stone walls of the kitchen garden lies the "Med Shed" where I meet Eimear Kinsella, head of nursing and family Services. It's bright and homely and smells a little of Dettol. "Eimear loves her Dettol," says Ahearn.

Kinsella laughs. “Dettol means it’s nice and clean and it’s sanitised and it’s safe,” she says.

Kinsella has colourful badges around her neck featuring Paul Newman, Superman, a Pokemon and a stethoscope. There are special examination tables on the backs of plastic elephants and dinosaurs. There are rooms the kids can sleep in, featuring beautiful quilts made by a Canadian volunteer and her friend.

When Kitty came here there was no explaining needed, because everyone was familiar with how somebody in her situation looked

“It’s not hospital-like at all,” says Kinsella. “The kids don’t mind coming in and having a rest. And we can keep them here overnight if they need to be monitored … In the summer when the kids are on their own it’s very busy. A good 50 or 60 of the 125 might still be on some kind of treatment ... Some might need bloods taken or dressings done. If they have any lines they might need flushes.”

Barretstown originally worked only with oncology and haematology patients but it has since expanded to include children who have any serious illness. A study of families undertaken by Yale School of Medicine found that sick children attending care camps of this sort had increased independence, confidence and self-esteem. “I think it’s just they get a little bit of normality,” says Kinsella.

“They’re going along and life is perfect. They’re going to school. They have their pals. They’re doing their training or ballet and then they’re hit with this terrible diagnosis and everything stops and they have endless hospital visits, and they’re poked at and prodded at. And they’re with their mam and dad all the time, they don’t get to hang out with their friends … It strips away everything.

“Because of the treatment, some of them can be very frail. They might not be able to do the things they were able to do a month ago or six months ago. So it’s very much about building them back up again ... A lot of [the parents] say, ‘You gave me back my child, the child that was there before they got sick.”

When 12-year-old Kitty Burke was eight she was diagnosed with stage 4 Wilms disease, a childhood cancer of the kidneys, and was subject to very intensive treatment. "This 2018 Kitty had a completely bald head, she had a tube coming out of her nose and a port in her blood system," says her mother, Lucy.

“Every social interaction she had, particularly with other kids … there would be a lot of staring and she’d have to explain. And when she came here there was no explaining needed, because everyone was familiar with how somebody in her situation looked and there were other kids that looked like her ... It was nice for her to be seen as ‘Kitty’, not to be seen as a sick kid.”

Kitty now looks fit and healthy with long plaits. “Your hair looks lovely, Kitty,” says a staff member as they pass by her a little later in the day. Kitty hadn’t met other kids in her position before coming here.

“I was so used to being in just one room in the hospital so I didn’t really get to meet any of the other kids … I only met people at Barretstown that were like me ... We just knew what each other was going through so there was no need to talk about that. So we just had normal conversations like any other kids would.”

Did she lose her confidence when she got sick? “A bit,” she says. “Because you just don’t know what your body will respond if you do certain things.”

What advice would she give for other kids who are sick? “People just don’t understand what it’s like, don’t be scared to own it. ‘This is me, I’m going to get through this.’ Don’t give up.”

They're not different. They fit in. They leave the illness at the gate

And what advice would she give to their friends and classmates? “Try to understand when they can’t do things like you do, or when they’re not in school. Just be respectful of what they’re going through.”

Lucy stresses how little psychological support there is for the families of sick children within the mainstream system. “You see this magical setting, everyone’s got smiles on their faces, and we’re doing some really fun stuff,” she says. “But the other side of the equation is very bleak. What you’re not seeing in these families is their day-to-day life, managing the sickness of the child.

“And you go into the hospital wards, and you see everything from the kid in a room by themselves because they can’t be exposed to other people, to the parent at nine o’clock with their microwave meal, to the guilt in the family about what you’re leaving behind … Your friends are brilliant, your family are brilliant, and people are very generous and supportive, but they just don’t know what that three am dash to hospital looks like ... Getting to meet other [families] and share stories, just giving each other a hug was just amazing.”

Nowadays when you wander around the Barretstown estate as well as the beautiful old house and the now converted stables, there’s an archery range, an adventure playground, a minigolf course, a silver winged pig in a field (a Gavin Friday sculpture donated by Dublin Airport) and the boat from the film Ondine sitting in a pond (donated by Ondine star Colin Farrell).

There are also several newer buildings – bungalows for families or summer-camping children, a large dining hall that can cater for 250 people and an accommodation space for volunteers known as Paul’s Hideout.

After lunch the Dalton family are playing minigolf near the flying pig. Thirteen-year-old Julie has been attending the rheumatology clinic in Crumlin and the family has been coming here for three years. "I was really nervous at first but when you get here it feel like you're just in a completely different place," says Julie. "No-one cares about anything and everyone is here because it's fun."

“We kept in contact with one particular family,” says her dad Niall.

“It’s most important for Julie because their child is the same age and very similar condition and it’s very good for them to connect on that level,” says her mother, Fidelma.

Had she met kids with her illness before? “No,” says Julie.

When you take a step back, and look at it, Madi doesn't have the normal life of a 12-year-old. No 12-year-old should know how to feed a child through a tube

Fidelma explains that it’s not always possible to make these connections in a hospital setting. Later Niall tells me how importance the connections are for Julie. “She can’t do things her friends are doing physically, so to meet someone in the same boat they can talk about things she can do and they can do together.”

In fitting contrast to this serious discussion, Niall is about to blindfolded for a minigolf game in which he directs the ball towards the hole with the increasingly hysterical guidance of his family. Did they expect Barretstown to be like this? "We didn't know what to expect," says Julie's 16-year-old sister Grace.

“Like having to dance for your dinner and stuff,” says Niall.

They have to dance for their dinner? “’Groove for your food,’ that’s what it’s called,” says Grace. “Everybody does it.”

Grace has run fundraising events for Barretstown at her school and is keen to come back as a volunteer. A significant number of people who come here with their families later come back as volunteers. “It’s such an important part of us and helps us so much that I’d like to do the same for other people,” says Grace.

“You learn to take things a little bit less seriously for the few hours you’re here,” says Niall. “When we come here we always look around and go …”

“We’re not alone,” says Fidelma.

All of the activities at Barretstown are designed to give the children back their sense of self-worth. So as well as more sedate pursuits like arts and crafts and drama and film they also do archery, horse-riding, climbing, canoeing and fishing.

“The types of things that when they’re in hospital or they’re in treatment, they can never imagine themselves doing,” says John Mitchell. “You see huge resilience ... The second year I worked here, there was a young girl who had her left leg amputated and she climbed to the top of the high ropes. When you see that happen, it’s incredible.’ ”

He talks about the power of getting these children together, how they buoy each other up. “It’s an exclusive club but the price of membership is very high,” he says. “You could have a child who has diabetes in a cottage with a kid who has leukaemia. When they get to swap their stories and talk to each other about it, that’s hugely powerful.”

“And they’re not the only child who might be here without any hair or prosthetic limbs,” says Dee Ahearn. “They’re not different. They fit in. They leave the illness at the gate.”

At Barretstown’s 285 seat theatre, which during the weekly summer camps is always the location for an end-of-week show, an upbeat cara is leading a circle of families in some movement exercises. Each member of the circle performs a move and then everyone else imitates it.

Six-year-old Isaac Keenan has climbed out of his wheelchair and crawls into the middle of the circle. Everyone encourages him and then follows suit. Isaac has an intellectual disability and a lot of medically complex needs.

“[He’s] tube fed; he has toiletry tubes; he is on a lot of medication, and he’s in and out of hospital,” says his mother, Ashley. “Our daily lives, and our ‘normal’, are different to everybody else’s.” She laughs. “Except for all the families here at Barretstown.”

Ashley’s 12-year-old daughter Madi was five when her brother was born. “I was very upset and I didn’t really know what was going on,” she says. “I didn’t know if he was okay ... My first time seeing Isaac, he was in an incubator, and I went in, and they were telling me I had to leave because they had to feed him. And I just said ‘no’, and I fed him through the tubes ... And then, ever since that, I’ve just been feeding or looking after him.”

Ashley says that Madi is incredibly responsible and caring with her brother but that it’s hard for her.

“She needs friends that understand how it feels to be a 12-year-old girl with a very sick sibling and a mammy that’s not always present … When you take a step back, and look at it, she doesn’t have the normal life of a 12-year-old. No 12-year-old should know how to feed a child through a tube … Or count a seizure calmly. There’s things she can do that adults can’t do.”

Madi recently went to one of the Barretstown sibling summer camps and for the first time met children in the same situation as her. Out in the wider world people stare at Isaac and are often scared to interact with him. That bothers her.

She tells me about how shocked one of her friends was one time that Isaac had a seizure and no adults were present. For Madi it was a routine event and she knew what to do.

At Barretstown, she says, the other children can relate to this sort of thing. “People here they’re like, ‘Oh, I get that too’ or ‘That happens me.’… And I’m like, ‘You understand!’… I was in a cabin with three other girls and they all helped out with their siblings.”

She beams when she’s talking about this. Isaac loves it too, she says. When he goes home he puts his arts and crafts projects on the wall and taps them appreciatively when he goes by. He often points at the logo on Madi’s Barretstown sweatshirt and then points to himself “and says ‘And me?’ because he thinks we’re going there.”

“You can see the light in his eyes change,” says Ashley “You can just see the happiness in his face. He glows the minute he comes through the gates.”