Mum of East Antrim teen born with rare genetic disorder pays tribute to NI Hospice staff

Brooke Harvey is one of just 100 people in the world born with Fucosidosis.

The degenerative and life-limiting condition means the 17-year-old Roddensvale School pupil looks much younger and fits into clothes for a nine-year-old.

The Carrickfergus youngster has never been able to speak and also suffers mobility issues, meaning she is confined to a wheelchair and requires round the clock care.

Brooke’s mother Lesley told the Times: “When she was a baby Brooke was not sitting up and I felt something wasn’t right. She was two when doctors diagnosed her with the disorder.

“We were told it is a life-limiting condition and she would likely only live to her teenage years. She is 17 now so every day we have with her is a bonus.

“It was a very hard thing to hear but you somehow have to come to terms with it.”

Then Lesley was thrown a lifeline in the form of the NI Children’s Hospice.

She added: “We first took Brooke to the hospice when she was three and it was very daunting at the start.

“But she absolutely loves it and actually cries when she has to leave. It is a second home to her.”

Lesley said she does not know how the family would have coped without the support of the charity.

As well as serving as a home away from home for Brooke, the hospice allows Lesley to devote some time to her youngest daughter Jade, who is now 16.

“It has been a real lifesaver and I honestly don’t know what I would have done without those amazing people who work there,” she said.

“I feel so comfortable knowing Brooke is in safe hands and that she is happy.

“There is also a really strong bond between the parents, as they all understand what you are going through and we can all talk openly.

“I also want to pay tribute to the staff at Roddensvale, who have been amazing with Brooke during 14 years she has been a pupil there.”