Banding together | 

Irish showbiz joins fundraising efforts for Westmeath twin boys with rare disease

Little Cillian and Rónán O’Keeffe from Mullingar, Co Westmeath, have been diagnosed with Mucopolysaccharidosis (MPS 1), also known as Hurler Syndrome.

The boys need full-time care

Little Cillian and Rónán O’Keeffe

Eddie RowleySunday World

Some of Ireland’s best-known entertainers have rallied around a family whose two beautiful identical twin boys have been diagnosed with the rare Hurler Syndrome disease.

Little Cillian and Rónán O’Keeffe from Mullingar, Co Westmeath, have been diagnosed with Mucopolysaccharidosis (MPS 1), also known as Hurler Syndrome.

The 16-month-old O’Keeffe twins now require specialist treatment, including chemotherapy and a bone marrow transplant, and have been transferred to the Royal Children’s Hospital in Manchester.

Their parents, Daniel and Edwina, who also have a healthy 10-year-old son Danny Jnr, are now full-time carers to their twins and are with them in Manchester.

The boys’ paternal grandad Danny O’Keeffe, who was the drummer in showband legend Dickie Rock’s band, told how the family have been forced to launch a fundraising campaign to cover their enormous costs.

Cillian and Rónán with mum Edwina, dad Daniel and older brother Danny Jnr

Eurovision king Johnny Logan is to headline a fundraising concert at Brogan’s Hotel in Trim, Co Meath on January 7, and money raised through a compilation album called My Songs My Friends, featuring 14 songs of Don Baker sung by Irish icons such as Sinead O’Connor, Finbar Furey and Brian Kennedy, will be donated to the O’Keeffe fund.

“At the moment we are working off a credit card to cover costs,” Danny Snr tells the Sunday World.

“Cillian and Rónán’s treatment could take up to nine months to complete, but without it their life expectancy will only be eight to 10 years.

“We don’t know what the future costs are going to be.

“We have been told that they may have mobility issues going forward even after the treatment.

“We don’t know if they will need wheelchairs or if they will be able to walk.”

The boys need full-time care

Looking back to Cillian and Rónán’s shock diagnosis, Danny Snr said it was “devastating” for their family.

“Hurler Syndrome is very rare. There are only 10 cases in Ireland,” he points out.

“The twins don’t crawl, they roll over, but they can’t get up on their hands and knees.

“If they are sitting up and they fall forward sometimes they get up, but most times they just fall over whichever way the weight takes them. But they can move their arms and kick their legs and hold things.

“They are just two incredibly beautiful children who are so happy in themselves and they draw you to them.

“Their eyes are large, but they don’t focus on you. They don’t focus on each other either, but they do touch each other when they are beside each other and they love being together.

“The only one who gets their attention is Mr Tumble on TV.

“They watch Mr Tumble on kids’ telly and for some reason he connects with them.

“They fixate on him and they actually belly-laugh looking at him. That programme is amazing. The only thing they look for is to be fed and changed and outside of that they are very, very good.”

The twins first went through the Children’s Hospital in Crumlin and Temple Street before it was decided that Manchester was their best option.

“The staff in Dublin were brilliant and the family were assigned a liaison person in Temple Street,” Danny says. “But the Royal Children’s Hospital in Manchester has the specialist treatment for this type of disease.”

Danny also pays tribute to Aer Lingus for the manner in which they supported the family on their flight to Manchester. “They were so good and even took young Danny into the cockpit and he was thrilled with that experience,” he says.

Danny Jnr is now back living with his grandparents and attending school in Mullingar.

“We want to make his life as normal as possible,” his grandad says.

“His mother and father are staying at a Ronald McDonald house beside the hospital in Manchester.

“There are two nurses assigned to the twins 24/7 and Daniel does the nights with them, Edwina does the days and they both do the afternoons.

“That’s their routine at the moment, they are on it 24/7, they don’t really do anything else. Initially they were told this could be anything from nine weeks to nine months.

“The treatment has been tough. Last week the boys were so sick, they were burning up with a temperature and they were vomiting while getting the chemo.

“They were really in a bad way. They have to have chemo first and then a bone marrow transplant.

“They have a bone marrow bank there and thankfully they have a perfect match for the twins, so it’s looking really good.”​

TO make a donation or buy a CD go to idonate.ie/crowdfunder/CillianandRonanFundraiser


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