AIB host fleadh seisiún in support of O’Keeffe twins

The Fleadh Cheoil coming to Mullingar offered an opportunity to further highlight the case of the O’Keeffe twins, Ronan and Cillian, and that is why Myles Gillespie, AIB branch manager, arranged a music session last Friday.

The identical twin boys have been diagnosed with Mucopolysaccharidosis (MPS 1), also known as Hurler Syndrome.

Already, in their short lives, they have undergone chemotherapy and bone marrow transplants, and had a long stay at the Royal Children’s Hospital, Manchester.

Mr Gillespie said the account for funds raised to help the family is at AIB Mullingar and he and the team there were delighted to help. “The boys need ongoing treatment, and I suppose, I thought it was an awful pity with the fleadh coming to town, that so many people would come to town and leave town, and nobody know about the difficulties the two boys face.

“It’s a matter of heightening awareness and maybe do a bit of fundraising for them.”

He contacted the Clann Lir branch of Comhaltas in Castlepollard, and they played and sang outside the bank on Friday, and members of the Lough Lene Set Dancers also performed for the large crowd that gathered.

The boys’ mother Edwina, and their grandfather, father and brother – all called Daniel O’Keeffe – were present with them to enjoy the music and dancing.

Both Daniel father and grandfather told the Westmeath Examiner that Cillian and Ronan are making good progress. Their father said: “They were on eight medicines each in the morning, then two later in the day and eight before bed, but they’re down now to two medicines in the morning and two at night. Their numbers are very good as well, their immune systems are coming up.

“Cillian is starting to walk now, which is great, so they’re starting to come on great. They have the tubes out – they had Hickman lines in their chests, and Ronan actually passed away getting the line put in, for a minute and a half, and he needed 15 chest compressions to get him back. So then, Cillian had to go down for the same procedure, and they’re identical, so you can imagine how nervous we were.”

Thankfully, Cillian recovered well and Ronan got through the procedure safely. Daniel said that had happened the day before the family were to go to Manchester for treatment, and as it turned out, the physicians there had to remove the single Hickman line and replace it with a double version.

“The medical staff everywhere were fantastic, especially Manchester, Temple Street, and they’re in Crumlin at the minute and they do physio over at Loman’s as well.”

Daniel thanked all those staff, the team at AIB, the musicians and dancers, the other musicians who played at fundraising gigs (Johnny Logan and Don Baker included) and “anyone who donated, anyone who said prayers, or lit candles, anyone who has helped – there’s too many to name them all.”

Cillian and Ronan turned two at the end of May. Their grandfather Daniel said: “They’re very happy and healthy at the moment, and when you see them, you can’t take your eyes off them – they’re identical and they’re always doing something, every second, they’re doing something.”

You can donate to the fund for the twins on idonate.