Family 'hurt' that City Hall will not be lit up to raise awareness of late son's rare condition

THE family of a North Belfast boy who passed away from a rare illness two years ago say they have been left "hurt" after learning Belfast City Hall will not be lit up to raise awareness of his condition.

Caoimhín Adams (8) from Bawnmore passed away on July 9, 2023.

Caoimhín suffered from encephalopathy, a disease affecting the functioning of the brain. He also suffered from complex epilepsy, cerebral palsy, chronic lung disease and autism spectrum disorder (ASD). He was then diagnosed with a condition known as ROHHAD, an illness with no cure or options for treatment that means his body was slowly shutting down. Caoimhín was the only person in Ireland to have this diagnosis.

Last year, to mark his first anniversary, Belfast City Hall was lit up in orange in memory of Caoimhín. Caoimhín's mum Caitriona said that she was under the impression that it was to be lit up every year on July 9 to raise awareness of ROHHAD.

After contacting Belfast City Council Caitriona said she has been left hurt after being informed City Hall will not be lit up today, Wednesday.

"I am hurt. After Caoimhín passed away I wanted to do everything I could to raise awareness of ROHHAD," she said. "Caoimhín is not going to be the only person to have gone through the doors of the Children’s Hospital with the condition.

"To have Belfast City Hall lit up would mean so much. It is the centrepiece of Belfast and Northern Ireland.

"I only found out last Friday that it would not be lit up this year. I sent a courtesy email just to make sure everything was sorted for Wednesday. To be told, it wasn’t applied for this year and would not be happening is so disappointing.

"It was my understanding that it was to happen every year on July 9 to raise awareness of ROHHAD.

"It should be on the illuminations calendar of Belfast City Hall just like other events like St Patrick’s Day, International Women’s Day and World Down Syndrome Day."

A Belfast City Council spokesperson said: “In 2024, it was agreed that City Hall would be illuminated on the first anniversary of Caoimhín’s death from an extremely rare condition. 

“This happened on July 9 last year. Requests for such illuminations are considered on a case-by-case basis and are not recurring. The council appreciates that this has caused disappointment in this instance.”