Belfast Telegraph

Antrim boy Patrick Irvine spends Christmas in hospital fighting rare gene condition

By Lisa Smyth

A schoolboy who almost died from a brain infection spent Christmas fighting a rare genetic condition in hospital.

Patrick Irvine from Drumbo, Co Antrim, was born with dystonia - a movement disorder that causes muscle spasms and contractions.

The 13-year-old has already spent two months in the Royal Belfast Hospital for Sick Children and endured two operations as he battles an infection.

Patrick's mum Geraldine has barely left his side during this time and had to celebrate Christmas Day with him in hospital.

"Patrick is more susceptible to infections but he has been very well over the years, really," said Geraldine (48). "But then he was in the hospital for six weeks over the summer and then home for about five weeks before he was brought back in, and we've been here for eight weeks now."

Referring to Patrick's dystonia, she said: "The condition was picked up after he was born; I suppose we realised there was something wrong when he wasn't reaching his milestones from about three months onwards. Initially, we were told it was cerebral palsy and then eventually we were told it was dystonia."

Geraldine has spent every night at the children's hospital while Patrick has fought for his life after suffering a brain infection. At one stage, he was admitted to the intensive care unit, where doctors feared the worst.

"He was in ICU for 12 days and it was touch and go," continued Geraldine.

"He went through surgery on his brain to remove some of the infection from his brain on the Tuesday and by the Friday he needed to go back into theatre again.

"They told us they didn't expect him to make it through, but he did because of all of their brilliant work.

"It has been scary, especially the surgery, because we didn't know if he would come back from the theatre, if he would come around or how it would affect him.

"He was on so many monitors in ICU but the staff are so positive and supportive that it really kept us going."

Patrick's condition has improved dramatically - but he is waiting for an MRI scan to decide whether he needs further surgery.

He spent Christmas Day in Paul Ward - where children with complex needs are treated - with parents Paul and Geraldine, and sisters 10-year-old Annie and seven-year-old Maggie.

"We had hoped he would be well enough to get home for Christmas, but he's definitely better than he was when he was in ICU," said Geraldine.

"The staff know Patrick's sisters very well and are so good to us and the girls will also visit other family on Christmas Day. I have slept here every night since Patrick was admitted, so I have been doing my shopping online and hopefully I will get out for a few hours before the big day.

"I am just so grateful for everything the staff in the hospital have done for us, from the cleaners to the consultants - they're all incredible."

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