THE family of a North Belfast boy who passed away from a rare illness says his legacy lives on as they prepare to mark his first anniversary.

Caoimhín Adams (8) from Bawnmore in Newtownabbey passed away on July 9 last year.

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 (rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation), 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.

Speaking to the North Belfast News, mum, Caitriona said: "The last year has been very tough for us all as a family but the support from the local community has been unreal, especially our wonderful neighbours.

"Caoimhín was the only person in Ireland with ROHHAD. When he presented to the hospital three years ago with weight gain, doctors were confused.

"Caoimhín’s rare diagnosis means the doctors at the Royal Victoria Hospital for Sick Children know more about the condition.

"I hope more children receive an early diagnosis which could give them extra time because of Caoimhín.


"It is important that people remember Caoimhín. His legacy is always alive in our home. We are always sharing stories and looking at pictures."

Caitriona has fond memories of a community fun day, which the family hosted at their home just hours before Caoimhín passed away last July.

"The fun day will always stick in my memory. Both sides of the community came out to support him," she added. "It was his last full day before he died. It really was a magical day.

"He laughed and smiled the whole day and enjoyed every minute of it. I cannot thank everyone enough who came that day and it made it a special day for us all."

To mark Caoimhín's first anniversary next Tuesday (July 9), a commemoration will be held at Belfast City Hall. North Belfast singer Meabh McNeill will sing three of Caoimhín’s favourite songs and there will be a number of prayers.

Invited guests include Carl Frampton, Michael Conlon and Cliftonville football team. Light refreshments have been donated by local businesses.

Belfast City Hall will also be lit up orange in memory of Caoimhín. Every year after, on July 9, it will be lit up orange to raise awareness of ROHHAD.

"It is a day I am dreading in a way," added Caitriona. "We have marked things like Christmas, his birthday and gravestone together and it is the first anniversary next week.

"I just hope it goes well. I know it will be very hard for us all. Everyone is encouraged to wear orange, which is the colour of raising awareness."