‘Having the specially-adapted room that Abbie deserves will be a dream come true’
The mother of a young girl born with a rare genetic condition that has left her needing 24-hour care says that giving her precious daughter her own specially-adapted bedroom would be a “dream come true.”
Suzanne and Paddy Gleeson’s daughter Abbie (6) was born with KCNQ2, a rare condition caused by a mutation on the KCNQ2 gene, located on chromosome 20 that has left the little girl wheelchair dependent, prone to terrifying seizures, non-verbal, peg fed and needing round-the -clock care.
The mum of six is hoping to raise €40,000 through a GoFundMe campaign to renovate an existing extension that suffers from leaks, and heating problems to give little Abbie the space she deserves.
Speaking on the situation Suzanne said:
“There are a lot of things in the room that need to be fixed. It started off with the radiators in the room not working but then when it started raining leaks started to pop up and every time I shower Abbie the floor floods.
“The room is so cold that you have to put a heater on as well as the radiators to get it at a decent temperature.
“On really cold days I can’t have her in the room at all, I leave on the radiators and a heater until I go to bed and when I do go to bed I have a monitor and at about about 3.30 am or 4am it goes off to say the temperature is too low so I have to get up during the night and put the heating on for an hour to try and get some heat into the room.
“She is now back spending most of her time in a cramped sitting room with eight people living there, without a hoist to move her around.
“If I could walk into Abbie’s room and not worry about it would be a lot of stress off because having a special needs child is stressful enough as it is.”
Born five weeks early in March 2014 weighing just 4lb 10oz Suzanne faced every parent’s worst nightmare when her newborn baby daughter suddenly began having seizures that lead her to spending three months in Temple Street Hospital.
It wasn’t until the age of two that Suzanne and Paddy got the devastating diagnosis that is believed to affect just a handful of people in Ireland. The Navan mum added:
“When Abbie was two and a half she was diagnosed with KCNQ2, a genetic mutation that causes her to take seizures and delayed development.
“She doesn’t talk, she is peg fed and wheelchair bound.”
“A couple of hours after she was born she started shaking.
“Two days later she was sent up to Temple Street to get an MRI and an EEG, she was taking loads of seizures and they wouldn’t release her back to Drogheda.
“She stayed there for three months where doctors tried to control her seizures.
“They said they didn’t think it would get one hundred percent under control so they allowed her to go home.
“They have eased as she has gotten older, but her last seizure was in October. Her whole body tensed up, she couldn’t breathe properly, and she bit her tongue, it went on for 40 minutes, it was terrifying.”
Suzanne also mum to Raymond (29), Karl (23), Liam (21) Amy (18) and Amber (14) has had further stress in her life having to fight for a place in school for Abbie.
“I had been fighting for Abbie to get a place in St Mary’s Special School in Navan but she kept getting rejected and we were told there was no places until 2024.
“The other other options were to have her home schooled in a freezing cold room, meeting no other kids and not getting out so she got a place in a unit of St Mary’s Special School in Drumcar based in Drogheda, it is a long journey every day for her but it was the best thing that I did, she gets all excited when I drive her up, she knows where she is going.
“When Abbie smiles, she brightens up your day and puts you in good humour no matter how you are feeling.
“We just want to do the best we can for her, she deserves the best quality of life we can give her.”