THIS brave seven-year-old girl has suffered 2,610 seizures in just two months, but her condition is so rare it doesn’t even have a name.
Wheelchair-bound Charlie Burridge is unable to speak and suffers from epilepsy, narcolepsy and cataplexy.
She has spent most of her life “locked” in her own body and is currently stuck in hospital.
Confined to the Royal Victoria Infirmary in Newcastle, Charlie has endured two stays in intensive care, been kept on ventilated life support and faces possible surgery after her bowel stopped working.
Doctors have only recently been able to lessen her seizures, which began in March.
The youngster is “fighting hard”, her family say, but she’s had a difficult time, with dad Brian Burridge, 46, staying at her bedside for more than 50 days.
The long stay in hospital has taken its toll on the family – especially on brothers Ben, five, and three-year-old Archie.
Mum Emma, 42, said: “At the moment we are split up, the boys miss their dad and sister.
“Her brother Ben is doing really well going to school and he’s been really selfless, he’s only five but he’s shown such a caring mature side to himself.
“Both the boys are finding it hard emotionally but we’re both so proud of them.”
Despite her illness, Charlie is a “typical seven-year-old girl”, who loves films, music and sport.
In the hope of giving her and her loved ones something positive to hold on to through the nights in hospital, friends have launched a bid to build a sensory garden in their Wallsend home, for Charlie and her brothers to enjoy together.
“It’s only the physical side of life that limits her,” Emma said.
“She is locked in her body so having somewhere to be able to enjoy and be active would be fantastic for her.”
Andrea Wright, who volunteers alongside Brian for the charity he founded, North East Homeless, started the appeal with pal Angie Comerford, in the hope of giving the family something good to come back home to.
Their world has been turned upside down
Family friend
Andrea added: “I feel so sorry for them because their world has been turned upside down.
“It won’t cost a lot to do, it’s mainly a question of getting the manpower to do it, and if we can just give them something to look forward to it will be worth it.
“We knew Brian had been talking about doing a garden like this for a long time, but with Charlie being in hospital we thought he obviously won’t be able to, so why don’t we do it for them?
“They don’t ask for much, they struggle on their own. I don’t know how Brian managed to set up the charity alongside all of this. If anybody deserves help it’s them.”
The sensory garden will be a space Charlie can enjoy but it will also offer a space for her brothers to simply be kids, without the emotional burden of worrying about their sister.
Emma said: “The garden would be a space for Charlie and her brothers to spend time together, in a safe place where Charlie feels free to enjoy her life.
“We can’t go far and holidays can’t really happen so enjoying space at home would be great.
“They both need somewhere to let off steam, Charlie is poorly at all times in the year so the boys miss out on days out in holidays and weekends but they won’t leave her behind.
“They don’t see it as fair if they get to go somewhere and Charlie doesn’t, so they choose to stay at home.
“They need somewhere they can run and play while Charlie is poorly.”
Andrea and Angie are collection donations for the garden work at https://www.gofundme.com/64ki38w.
They are also urging any builders or tradespeople who might be able to help with materials or expertise to get in touch via the Facebook page.
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