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Sunday 17 December 2017

'Her body just gave up', says the father of tragic Battens girl Abbey (5)

Mum Linda with Abbey, who was diagnosed with the rare and fatal brain disease 18 months ago
Mum Linda with Abbey, who was diagnosed with the rare and fatal brain disease 18 months ago

A Dublin family is "lost for words" after losing their five-year-old daughter to a rare and fatal brain disease.

Tragic Abbey McGuinness was diagnosed with the incredibly rare Batten disease in May 2015.

The illness, which affects only a handful of children across the country, results in the loss of all of the senses, except hearing.

Abbey contracted a bout of pneumonia at the beginning of December, but doctors thought it was treatable.

However, her condition deteriorated rapidly and she passed away at her home in Tallaght early on December 10, leaving parents John and Linda heartbroken.

Tribute

Speaking to the Herald, John said the family knew the end was coming, but it was still difficult to comprehend.

The couple paid tribute to Abbey, saying her sprightly take on life is something that they will keep with them forever.

"I don't know what to feel really, because it was our routine," said John.

"Everything is turned upside down. You were getting up doing what you had to do for her. She came first all the time, so it's very hard to do nothing other than reflect on memories.

"The one thing with Battens is that you don't have time, but we made the most of what we had.

"There wasn't a day that went by when Abbey didn't have a smile. Even in her last day or two, she was still kind of able to smile somewhat.

"She had amazing love for the simple things, which always kept her happy," he added.

With Battens, families are advised to devise a plan on how they would like to spend their last moments with their child, a meeting which was due to be organised in the coming weeks.

Prior to Abbey's illness and death, John and Linda had bought some of Abbey's Christmas presents and taken her to see Santa Claus.

"She just loved Christmas. It was one of her favourite times, she was ho, ho mad in a sense.

"The week before her death we brought her to Tayto Park. Santa Claus held her in his hands and said 'Ho, ho, ho, Abbey', and she just lit up. She knew it was getting to that time of the year again.

"We hadn't a clue what to get her. Her eyes had given up, her body had more or less given up, she couldn't do anything unless we helped her.

"She was also non verbal, so couldn't tell us this, that or the other. We were just going with the audio sensory kind of things, the programmes she liked."

Abbey's passing coincided with the fifth anniversary of John's father's death.

Familiar

"It gives us a bit of comfort that it was on his anniversary, so hopefully he was there looking after her."

When the couple, who are also parents to Kira (4), were told that Abbey had only a couple of hours left, they worked with Tallaght Hospital, the Laura Lynn Foundation, Bee For Battens and the staff at the local Hickey's pharmacy in Fortunestown to ensure her last moments were in familiar surroundings at home.

"It was 20 to five on the Saturday morning that she actually passed," said John. "We were lying beside her bed.

"She was at home in her new bed, comfortable with us," he added.

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