THE parents of a Co Antrim schoolgirl who died last month after being on life support for the 24th time have told how her determination and ability to "smile even when in pain" will forever inspire them.
Claire McGuigan (13) passed away as she was held by her mother Tracy and surrounded by her father and siblings in the intensive care unit at the Royal Hospital for Sick Children on April 7.
The teenager, who attended Kilronan School in Magherafelt, died four days after suffering a serious epileptic fit at her home on the Ballyscullion Road near Moneyglass.
Born in June 2005, Claire was only one day old and still in hospital when she contracted bacterial meningitis and then whooping cough, which meant she was almost six months old by the time she was allowed home for the first time.
However, she was soon back in hospital, having suffered a seizure which doctors diagnosed as an infantile spasm.
As the seizures continued, Claire was diagnosed with epilepsy and cerebral palsy at the age of two.
Further concerns were raised when she also showed signs of having severe global developmental delay which led to her being unable to sit properly, feed or talk.
At the age of four, Claire was referred to specialists at Great Ormond Street Hospital in London, who said she had a form of Dravet syndrome, a very rare form of childhood epilepsy.
Claire's parents were then told it was unlikely their daughter would live beyond the age of seven to 10 - news they described as being "hard to comprehend".
She continued to suffer numerous types of seizures on a daily basis, morning and night.
Claire would also take up to 50 or 60 drop-type seizures a day when she would black out, often leaving her with cuts, bruises and broken bones.
On Wednesday April 3, she had returned home from school and had just spoken on Facetime to her dad, who was on a work trip to Scotland, when she suffered a serious seizure.
She was taken to Antrim Area Hospital where she was put on life support, and later transferred to the intensive care unit at the Royal in Belfast.
Despite being stabilised, Claire's condition deteriorated and it was found she had various infections in her chest and blood.
It was during this time that the teenager's parents were told she had a less than five per cent chance of survival.
"Clare has been on life support 24 times," said her mother Tracy.
"She battled through 23 but didn't make the 24th.
"There were days Claire would have been on life support for 24 hours and at its worst, 10 days. We never thought this time was going to be any different.
"All Claire’s episodes had a detrimental effect on her. We felt we would lose part of her afterwards, it was like deleting part of her progress as she got more and more fits the older she got.
"It got to the stage she didn't walk any more, she stopped talking. It was tougher for her to get back to herself."
The mother-of-three said hearing the news her daughter wasn't going to make it was very hard for the family.
"When her blood pressure and saturation levels went down, they never came back up again to normal levels. This was when we knew she was not for coming home."
Claire and her family were moved to a side room and the medical team gave them 24 hours to allow all family and friends to come and say their goodbyes.
On Sunday April 7, Claire's father Dessie was allowed to lie on the bed beside her to give her one last cuddle.
She was then lifted out of bed and given to her mum who held her on her knee before she passed away with her parents and siblings around her.
Tracy described her daughter as someone who was "always smiling, always happy" and said losing her has left a "big void in our lives".
"People would be attracted to her red hair and her smile. Clare would have put her hand out to greet them," she said.
"We have never had a day seizure-free in our lives. The day she died was the day she was seizure-free".
Dessie said he has been left with a "nervous, sick feeling" in his stomach since his daughter's death.
The family are now intending to fundraise in memory of Claire for the charities who helped them, including Meningitis Now, the Dravet Syndrome Foundation, the Michaela Foundation and the Northern Ireland Children's Hospice, where Claire had enjoyed respite.
Around £1,500 has already been raised for the hospice.
Tracy said: "Claire never gave up - even on hard days she had a smile, even when in pain. She has inspired us to never give up."
