Friday 24 October 2014

Camp offers families some serious fun after illness

Barretstown activities help children like brave Daniel Daly, who survived leukaemia, to rebuild their lives with loved ones.

Published 12/08/2014 | 02:30

Fergus and Karen Daly with their children Lucy (6) Daniel (11) and Melanie (9), at their home in Cloghan, Co Offaly. Pic James Flynn

In December 2008, Fergus and Karen Daly's then six-year-old son, Daniel, was diagnosed with leukaemia.

"All of a sudden Daniel just got sick. He had a slight temperature and a pain in his stomach," Fergus explains. "We brought him to the doctor, thinking it was maybe just an upset stomach, but three or four days after that, he just went rapidly downhill. We had no idea what was wrong with him, so we brought him down to our local hospital, Portiuncula, and within a few hours we were sent to Dublin."

At Portiuncula, Daniel was diagnosed with leukaemia.

"They told us within about four or five hours of us going in," says Fergus. "They were able to tell us that quick, because Daniel was in a very bad way. It turned out that the pain in his stomach was actually haemorrhaging inside."

Daniel was quickly transferred to Crumlin Hospital, where he spent two weeks in intensive care and a further two and a half months on St John's ward.

"We were told he might not make it through and that if he did he would be brain damaged," Fergus says.

As a result of the leukaemia, Daniel had suffered a major stroke down the left hand side of his body, and a bleed into both eyes.

"His blood had gone so low that it wouldn't clot," says Fergus. "After two weeks, he pulled through and they took him out of ICU."

When Daniel awoke from the ordeal, he was unable to walk or talk, and had lost the sight in both of his eyes.

Fergus recalls: "He couldn't even cry. You could see him trying, but he just couldn't.

"He had to go back and learn everything again from the start," Fergus adds. "When his speech came back it was a funny moment, because he was a month out of ICU before he started to talk and when he did it was purely accidental."

Daniel's first words since his stroke came in a mumble, reprimanding his father, who had unknowingly adorned his son's cereal with salt instead of sugar.

"He mumbled something giving out to me and he hasn't looked back since!" Fergus laughs. "I was so happy I didn't care what kind of a word it was, good or bad."

While Daniel's speech and his ability to walk eventually returned, his eyesight has sadly never been restored.

"He got back to talking properly and eating and walking properly. He overcame all of that and the brain surgeons had given him almost no hope. They said he'd be lucky if he lived," Fergus says with pride.

After he recovered from the stroke, Daniel faced a full year of intensive chemotherapy followed by a three-year chemotherapy maintenance programme.

"It was a long battle for him," said Fergus. "It's only now he's really getting back to himself."

Dealing with Daniel's illness was tough, both emotionally and logistically for Fergus and Karen, who also have two daughters, Emily (9) and Lucy (6).

Both parents were forced to give up work so that they could stay with Daniel in the hospital throughout his year of intensive cancer treatment, which meant they had to rely heavily on the help of family and friends to care for their other children.

"We have a big family on both sides who all live locally, so it was never a problem getting someone to drive to Dublin, or whatever it was you needed help with. Daniel spent three months in Crumlin at the start. So I would do two nights and my wife would do two nights, and someone would have to bring us up and down a couple of times a week. They were very good," said Fergus, who is incredibly proud of his son and how well he has coped - with the leukaemia and his speedy adjustment to life without his sight.

Fergus explains: "He has it in his head that someday he is going to get his eyesight back; he is hoping that some surgeon is going to come up with something that could help him - some stem cell cure that could reverse some of the damage that was done. That's what he has in his head, so I don't want to disagree with him on that one; if that keeps him going, then that's well and good."

Daniel has returned to school and caught up with his classmates, while also learning Braille. He starts sixth class in September.

"We go to Crumlin now twice a year and so far he has been free from the leukaemia for the guts of two years," explained Fergus.

The Dalys heard about Barretstown while Daniel was in Crumlin Hospital, but it was over a year later, in 2010, before Daniel was well enough to attend his first family camp. The organisation is now a big part of the family's lives.

"The whole family went and we absolutely loved it," Fergus says. "You might think your story is bad, but you'd talk to the other parents there and hear a lot worse. You don't feel like you are on your own.

"It's great and the kids meet other kids, who have been through the same."

Fergus' wife Karen agreed: "When you are there, it's not about what your child has, they don't want to know that; they just want to know how he has been and what he likes to do. It's a wonderful place."

  • To celebrate Heritage Week, the Battle of Giants family event in Lough Boora Discovery Park, Co Offaly, will take place on Sunday August 24, from 12-5pm, with Irish legend Fionn MacCumhaill battling Scottish giant Angus on the spectacular grounds. There will be a range of fundraising activities throughout the day to help raise funds for Barretstown as part of their 20th anniversary celebrations. For more information, see www.loughboora.com.

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