Saturday 25 May 2019

'Her legacy will live on' - mum's heartbreaking tribute to girl (13) who died after lifelong battle with seizures

Caitlyn McAllister
Caitlyn McAllister

The funeral of a 13-year-old who died on Christmas Day after a lifelong battle with seizures will take place today.

Caitlyn McAllister, who was from Larne in Co Antrim, suffered from chronic epilepsy and congenital dislocations to the shoulders, elbows, hips and knees, and had not been expected to survive beyond a week when born.

Despite the grim prognosis, Caitlyn went on to defy the medical odds.

In the first 10 months of her life she had as many as 3,000 potentially fatal epileptic seizures - up to 40 a day.

Her mum Paula said Caitlyn had started to "fade away" during the past few weeks.

"About a month ago we could see the deterioration," she recalled.

The family thought they were going to lose their "perfect wee soul" on Christmas Eve.

"I never thought it would be so peaceful," Paula added.

"Christmas Day was Caitlyn's favourite. She loved having everybody in the house around her. This day was her day. She got a special day. A special day for a special girl.

"Everybody who met her loved her. She just kept going. Even her original consultant said he had learnt so much from Caitlyn.

"Her legacy will live on in other people and what they have learnt through her."

Paula said Caitlyn had received treatment at Great Ormond Street Hospital in London for her stomach when she was four and was given new medication that changed her life.

Doctors said that they had never seen a child whose body was able to sustain so many seizures over such a prolonged period.

A new drug enabled the recurrence of seizures to be reduced to four a day by dulling brain activity so that they were no longer life-threatening.

Despite medical predictions about her childhood development, in her early years Caitlyn tried to sit up and talk, and was not blind as initially feared, although she had some sight loss.

Fundraising for a new extension at her home enabled a specially-equipped room to be added.

She also had two teachers over the years.

Paula added: "Caitlyn was never well enough to go to school but her room gave her a life that no one could ever imagine, with all her sensory stuff."

She also wrote in an online post that Caitlyn had "outweighed the odds and stolen the hearts of many".

"Little princess Caitlyn will always have a special place in my heart," she said.

Condolences have poured in.

Maureen Johnston said: "Heaven has got a very special angel."

The funeral will Caitlyn's home in Walnut Avenue at 10.30am for Mass of the Angels at St Anthony's Church at 11am.

She will then be buried at Larne's Craigyhill Cemetery.

Belfast Telegraph

Editor's Choice

Also in Irish News