Belfast Telegraph

UK Website Of The Year

Heartbreak as toddler Fiona Carroll loses battle with Cockayne syndrome

By Cate McCurry

Published 11/12/2015

Fiona Carroll
Fiona Carroll
Fiona with mum Aisling

A toddler with one of the rarest conditions in the world and described by her mother as her "miracle child" has died.

Little Fiona Carroll, who was the only child in Northern Ireland with Cockayne syndrome, passed away on Wednesday night.

Her devoted mum Aisling Carroll, from Enniskillen, had vowed earlier this week to find a cure for her three-year-old.

The Fermanagh woman also said she wanted to raise awareness of the cruel condition.

CS is a rare disorder that occurs in only about two per million newborns in the United States and Europe.

It is characterised by short stature and an appearance of premature ageing.

Features of the disorder include a failure to gain weight and grow at the expected rate and impaired development of the nervous system.

Affected individuals can also have extreme sensitivity to sunlight, while other possible signs and symptoms include hearing loss, eye abnormalities, severe tooth decay and bone abnormalities.

Speaking earlier this week, Aisling explained that Fiona was born with the condition but it wasn't until May of this year that she was diagnosed with the rare disease.

Last month she held a fundraising night in her home town and raised more than £1,400 for a charity related to CS.

Fiona attended Willowbridge School in Enniskillen five days a week.

While the toddler had been in and out of hospital this year, it had been three months since she was last hospitalised, until she sadly passed away on Wednesday night.

Tributes to the youngster were posted on Willowbridge's Facebook page yesterday: "Our hearts are broken again as little Fiona Carroll-McGirr fell asleep last night and joined the Angels in Heaven," said one.

"Our thoughts and prayers are with her friends and family."

Belfast Telegraph

Read More

From Belfast Telegraph