Stars row in to help Mullingar twins with rare syndrome

A fundraising campaign has commenced for 16-month-old twin boys, Cillian and Rónán O’Keeffe from Abbeylands, Mullingar, who are currently undergoing treatment at the Royal Manchester Children’s Hospital.

The identical twins were diagnosed with Hurler Syndrome, the most severe type of mucopolysaccharidosis type 1, meaning cells can’t break down sugar molecules, affecting how they function. Symptoms are life-threatening, as the condition targets bones and organs, as well as causing issues with cognitive development, but treatment can increase life expectancy.

Their grandfather, Daniel O’Keeffe, a musician who lives in Gleann Petit, has organised a fundraising drive, including a concert with Johnny Logan and friends in Brogan’s Hotel in Trim on January 7, while Don Baker has donated proceeds from his latest album, ‘My Songs My Friends’, featuring the likes of Sinéad O’Connor, Finbar Furey, Declan O’Rourke, Mick Pyro, Brian Kennedy, Rob Strong, Liam Ó Maonlaí and Paddy Casey and others, to the cause.

There is also a crowd funding page at idonate.ie/crowdfunder/CillianandRonanFundraiser.

“My son Daniel and his wife Edwina Gaffney have three children, two beautiful twin boys and their 10-year-old son, Daniel. He’s staying with us while his parents are over with the twins in Manchester, as he attends Gaelscoil an Mhuillinn,” said Daniel. “Treatment involves chemotherapy and bone marrow transplants and they have travelled to hospital in Manchester as it’s a centre of excellence for the disease.

“It’s very rare, seemingly there’s only about 10 Hurler Syndrome cases in Ireland, so we’re putting a fund together to help them out. It’s going to be really expensive, especially into the future, as both my son and his wife are going to be carers for the rest of the twins’ lives.

“I’m a musician and a lot of people in the business have come together to give us a hand. Johnny Logan is doing a concert for us on January 7 in Brogan’s Hotel in Trim. Don Baker will be on the bill as well. There’s lots of people in the business who will be at the gig,” said Daniel.

“They’re 16 months and they’re not crawling yet, they stand if you hold them but they collapse back down. One of the nurses noticed something wasn’t right when they were around a year old. They were tested and then they found this. I think it’s the first time identical twins were ever diagnosed with it.

“They’re over there about a month now and they were told initially that treatment would take anything from nine weeks to nine months, but they really don’t know. It’s day by day. Without appropriate medical treatment, their life expectancy is between eight and 10 years, but if they have the treatment and it’s successful, they could live into adulthood,” said Daniel, who is a drummer and has worked with some of the best in the business.

“I played with everybody down through the years – when I left school at 18, myself and Johnny Logan played together, back in the late ‘70s, in a band called The Giants, with Rob Strong, and Johnny’s brother Mick. And from that we became great friends, and he asked me to put the Johnny Logan band together in 1979, which I did, and we were flying, going great, and then he sang ‘What’s Another Year’, and puff, he shot to stardom.

“I kept working. I was with the Burlington Symphony Orchestra for a while, Brendan Grace for two years, Don Baker for two years, and Dickie Rock for 33 years. I joined Dickie in 1986 initially and I was with him right up to his last gig in 2019, just before Covid hit, in the Millennium Ballroom in Derry. He’s 84 years of age but he was singing great. He was the only guy that could actually fill the Gleneagle ballroom in Killarney.”

Speaking of Christmas, Daniel said his 10-year-old grandson, also called Daniel, was traveling to Manchester to be with his parents and brothers for two weeks.

“The only thing the twins are mad about is this Mr Tumble on CBeebies. He’s brilliant, the man is a genius with children. Santa was to bring them two Mr Tumbles, and Daniel was going over to his parents and brothers for two weeks. Because their names are Rónán and Cillian, they love them in England. They’re getting great treatment over there.

“And I have to say Aer Lingus were fantastic. Daniel flew over with them when the boys went over first, and the cabin crew took Daniel up into the cockpit and they let him see where they were going.

“Daniel stayed with them for about a week and then I went and picked him up. We’re lucky that we’re very family orientated, and Daniel has his cousins nearby and they’re all very close.”

Daniel (senior) adds that Don Baker has donated his new album to the fund. “Don wrote every track on it, and he just said to us ‘I’m giving you the album for the fund’. He had to contact everybody on it to get their permission, but they all said no problem, so that was very generous of him.”

The album ‘My Songs My Friends’ is for sale online for €15 – details are on the crowd funding page idonate.ie/crowdfunder/CillianandRonanFundraiser.