Cork dad’s praise for Barretstown retreat

Have you ever been to a 7-star resort in Ireland? The O’Sullivans of Ballincollig have.

Barretstown, located in Co. Kildare, is an organisation that provides residential camps and programmes for children and their families who have been affected by cancer and other serious illnesses.

Founded in 1994, it is marking its 30th anniversary this year,

“Barretstown is like a 7-star resort,” says dad Cian O’Sullivan. “We also went to Disneyland Paris, and we asked our kids which place they liked going to better. Elayna and Alex were unanimous in their choice - Barretstown. There was no contest!”

The family were happy campers.

“Barretstown allows children to be children again, away from doctors, nurses, hospitals, tubes, drips and the general medical environment,” explains Cian.

Elayna and Alex have one of the rarest diseases in the world.

Glansmann Thrombasthnia (GT) is a chronic life-long condition. Sufferers bruise and bleed easily. It is caused by problems with platelets, the tiny blood cells that help your blood clot. If you have GT, a genetic mutation prevents your body from making a key protein in your platelets needed to make blood clots.

“One of the hardest things is being out and about with the kids and you can sense people judging you because Elayna and Alex would often have bruising on their bodies. That’s hard,” says Cian.

Having sick children is not fair.

“No child should ever be sick,” says Cian. 

It’s just so wrong. Nikki and I are living with an isolating, scary condition that’s so rare, it’s estimated to affect only one in a million people. It can leave Elayna and Alex covered head to toe in swollen, massive bruises. 

"Or needing special meds and days in hospital to stop the bleeding, for scrapes and bumps that are just an ordinary part of growing up for other children.”

When did life change for Cian and Nikki?

“Hours after Elayna was born, the life we had imagined changed completely,” says Cian.

“I’d just made a quick trip home when Nikki rang me from hospital.”

Elayna had a problem.

“They wouldn’t know why for months,” says Cian. “With all her bloods coming back normal, scans of her head, everything the experts could think of.”

New parents Cian and Nikki were baffled.

“Who would suspect Elayna had a disorder almost no-one on earth had? When our little man, Alex, came along a few years after, Crumlin and Cork specialists knew our children had Glanzmann Thrombasthenia. I think there are nine or ten people in Ireland who have it,” says Cian.

“Yet, we found ourselves the young parents of two children with GT.”

“Our children can bruise just from sleeping,” says Cian. 

They bleed at a drop of a hat. And when they do, they don’t stop.

How does it affect Cian and Nikki?

“Taking to other parents at Barretstown, where we can all open up, your children can become a curiosity; be it because of a bald head, or a ‘moon face’, or obvious swelling. You can only imagine how people stared at my family, at me, at Nikki.

“We had two little children all patched up,” says Cian. “Bruised black and blue. Walking down the street, you get the feeling people think you’re actually hurting your child, and that’s a horrible feeling for a parent who’s trying to do their best for their beloved little one, their complete bundle of joy.”

How did that negative attitude from some people affect family life?

“It got to where we tried to stay inside,” says Cian. “And that’s a lonely way to live.”

“Endless questions race through your head,” adds Cian. 

With such a rare, serious diagnosis, could our babies ever be ‘just kids’?

Yes they could. At Barretstown.

Spending precious time there, where everyone becomes a child again, and where sick children can reclaim some of their lost childhood due to illness, is something special.

“Us parents become children again!” says Cian.

How does a 7-star venue operate?

Cian laughs.

“I can tell you that the minute you enter the gate at Barrestown, it feels magical. The interaction with others, singing, dancing, not to mention being served delicious food, is like being in a different wonderful world.”

Barretstown is a magical place that creates a magical world for sick children and their families.

“When we rocked up, driving into the camp, looking at the lake, the beautiful woodland surroundings; we felt joy and there was a smile on all our faces,” said Cian.

Adventure, fun, games, activities, and friendship beckoned.

“We were so fortunate that our Crumlin and Cork Haematology teams told us about Barretstown, then we applied,” says Cian.

They got the 7-star treatment.

“A lovely smiling person greeted us, took our bags, and asked was there anything he could do for us before he showed us to our accommodation. We made lovely memories at Barretstown.”

Cian and Nikki left all their troubles behind when they left home with their precious children.

“I still get emotional thinking of how, without all the support Barretstown gets, we might not have been able to go,” says Cian.

“Families like ours just can’t go on holidays. We’re trained to give medicine, and we take it everywhere we go. Alex still has a port, a cath’ fitted, and we always need access to a haematology clinic. 

To come up the drive into Barretstown, past the lake and wooded land, then to know there’s a men shed on site with everything waiting - even a top- class medical team like the kind our Elayna and Alex need... it is a relief in ways I can’t describe.

Describe the vibe at Barretstown.

“There are no side-ways glances. No judgement. Just an aura of pure joy,” says Cian.

People power makes the magic happen.

“It’s people donating, it all happens out of the goodness of their hearts, for little children like mine that you mightn’t ever meet face-to face.”

Not all heroes wear capes.

“Alex went to Superhero Club,” says Cian. “He loved it, wearing his Spiderman, Pokemon, and Pikachu costumes. At home he wears his Barretstown jumper. Now we know how much Barretstown means to him.”

Forever memories are made there.

“Our Elayna loved the arts and crafts most,” says Cian. “It really resonated with her. All the kids love the fun and games together.

Laughter is the best medicine.

“The fun is like another kind of medicine,” says Cian. “It’s the healing they carry with them.”

Children experiencing the magic of Barretstown gain confidence and self-esteem that says with them.

“If you met Elayna today, you’d see the confidence in her eyes,” says Cian. Barretstown brought that out in her, that feeling she can do anything, despite her illness.

Elayna, who loves swimming, dancing and gymnastics, does many amazing things.

“She and Alex go to the same school in Ballincollig where their teachers are very supportive,” says Cian. “If ever Alex is feeling down, Elayna is on hand to comfort him. She’s his mini mum!”

Since 1994, Barretstown has served over 125,000 campers. It aims to provide therapeutic recreation to sick children and their families. The camp is keen to stress that visitors to Barretstown should forget about illness, learn to have fun, and learn to rebuild confidence and self-esteem.

Barretstown was founded by Hollywood legend Paul Newman, who envisaged a custom-built paradise for children that he would model on his USA ‘Hole In the Wall Gang Camps’, giving children with serious illnesses from Ireland, Europe and the USA a retreat.

The actor started his charity with $2 million of his own money, while the Irish Government gave a generous donation of 500 acres of land in Co. Kildare for his project.

“I hope my legacy is not my acting, my racing, or my politics” said Paul Newman, who passed away in 2008. “I hope it is my camps.”

Phone:O45-864115

info@barretstown.org