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Belfast Live
Belfast Live
National
James Martin McCarthy

Tributes paid as young boy diagnosed with rare condition dies hours after fun day

Tributes have been paid to an eight year old boy who died hours after a fun day was held for him.

Caoimhin Adams from North Belfast had been diagnosed with a rare condition called ROHHAD (rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation) back in January.

He was the only person on the island of Ireland to have this diagnosis and only the third in the world to have ROHHAD with encephalopathy.

Read more: Mother of terminally ill Belfast boy says family 'inundated with so much kindness' ahead of fun day

Paying tribute to Caoimhin on Facebook, Principal of Hill Croft School Roz McFeeters said: "It is with deep sadness that we inform our school community of the sad loss of one of our pupils Caoimhin Adams.

"Caoimhin was a pupil with us from 2018-2023. He has always struggled with very complex health needs, but he never let them hold him back.

"Caoimhin always had a ready smile and a sense of fun and adventure. He greeted his staff team and friends with a huge, “Hey guys!” when he arrived at school each day. He loved dressing up; role play and especially messy play. He loved the busyness and bustle of the classroom and being surrounded by his friends.

"Caoimhin’s health significantly deteriorated over the last year, and he had been unable to attend school. He was a much-loved pupil who stole the hearts of all who worked with him. His bravery and determination despite all he faced each day, is an inspiration to us all.

"Our thoughts and prayers are with his parents Kieran and Caitriona, his sister Aimee, brothers Dylan and Aodhán, and all the family circle in this tragic loss. Our school family grieves with your family.

"He will be so deeply missed, but never forgotten."

Earlier this week, Caoimhin's mum Caitriona told Belfast Live that since his diagnosis, the local community rallied round to support the family.

"Belfast City Airport put on a fabulous day where he was known as 'Captain Caoimhin'," she said.

"He got dressed up as a pilot, and he got to meet the pilots and the cabin crew, and to pretend to drive the airplane. He went to the airport fire station and got dressed up as a fireman, and got to do all the water things as on the fire engine.

"That was the most special day we've had so far. And they done it from the heart, it wasn't for the publicity. Kingsbridge foundation sent us to Longford centreparks for two days.

"It's a private hospital. They contacted me and said that because Caoimhin had made history they would like to fund the family for us to go away as a family for a few days. Fonacab paid for the six of us to go down to Longford. They've all been unbelievable."

A coffee morning which was due to be held today to raise money for Caoimhin has been postponed.

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