Family devastated to find Abbey (4) has fatal Batten Disease
A Dublin family are living their “worst nightmare” after they were told their four-year-old child has an incredibly rare and fatal brain disease.
Abbey McGuinness was diagnosed with Batten Disease in May and her parents are in the dark about whether she’ll live for six months or six years, as her condition can deteriorate dramatically.
The illness will cause Abbey to lose every single bodily function, except her hearing, according to Tony Heffernan, who set up charity group Bee for Battens with his wife Mary after both of their children passed away from the illness.
Linda and John McGuinness said that they are trying to put on a brave face and be strong throughout the day, but it’s difficult to even hide their heartbreak from their younger daughter Kyra (2).
“We try to stay strong, but even Kyra knows something is wrong,” said Linda.
“We were putting her to bed last week and she said ‘mammy, daddy, why are you sad?’ It’s tough.”
Abbey was very much like a normal child up until recently, when a number of different symptoms came together to reveal the worst.
“It started with her speech, she wasn’t talking properly, and it wasn’t really developing, and then she was a bit clumsy walking,” said John.
It was only towards the end of last year when the epileptic fits began that they then decided to take her to the hospital.
“We were watching telly one morning and she jumped twice while sitting on my leg,” said John. “She’d never done anything like that before so I just thought she got a fright, but then later we brought her to Eddie Rockets and she just kept falling forward, as if her body was temporarily shutting down.”
After numerous tests and no clear explanation, the couple mentioned to the doctor that John’s cousin had died, aged eight, of Battens about 30 years ago.
“The more we began to look into the disease – it was textbook what was happening to Abbey. It was our worst nightmare,” said Linda.
“We’ve seen deterioration in her – but we’re trying to do everything we can and take every day as it comes.”
Recently John and Linda brought Abbey to the playground, but upon getting to the top of the slide, Abbey had a seizure, fell and broke her arm.
“Abbey cannot drink from a cup or glass without spilling it, she shakes so bad she can’t hold it, nor can she walk up the stairs unaided,” Linda said.
The couple want to raise awareness of their daughter’s illness and to help support Bee for Battens’ families. To donate €4 to the charity, text STAR to 50300.