HEARTBROKEN parents have been told their severely disabled baby daughter faces a battle to reach her second birthday.
Despite a healthy birth, 13-month-old Ella Gray has developed Krabbe Leukodystrophy, a rare disorder which affects her nervous system.
Medics have told the tot’s parents Simone Hodgkiss and Bradley Gray that there is no cure for the youngster, who needs five different medications and 24-hour care each day.
Loving mum Simone, 20, today told the Echo: “Now, it’s all about creating memories for us and making sure she is as comfortable as we can.”
The youngster was born on March 27 last year, but it wasn’t until about the age of five or six months that Ella first became unwell and was taken to the University Hospital of North Durham.
“She kept having little spasms, so she was admitted where they did loads of tests on her.
“Then they told us what the diagnosis was and the only thing we can do now is to stay strong for her.”
The inherited neurological condition is said to affect one in every 100,000 babies and occurs when the brain fails to make a special protein which is needed to break down complex molecules, called lipids, in the brain.
Because of her condition, Ella is unable to do anything for herself and cannot move unaided as her condition deteriorates.
A team of nurses come to treat her and she also receives physiotherapy,
“She can’t eat or swallow and needs to be fed by a tube,” added Simone, of Great Lumley, near Chester-le-Street.
“We have to give her a sedative on a night or she can’t sleep.
“I’ve got a seven-year-old sister, Olivia, and she’s the one who gets the most response from her when she comes over.
“She’s got no quality of life really, so that’s why we just want to make the best of the time we’ve got left together.”
The family are going on holiday to the seaside town of Bridlington, in east Yorkshire, donated by Parks Resorts, as they look to get some rest and relaxation.
“It’s by the coast and hopefully Ella will enjoy it,” added Simone, a valuation officer in Durham City.
“We want to take her to the beach so that she can feel the sand and water on her feet.”
The family also say they are keen to promote awareness of Krabbe Leukdystrophy through the charity Save Babies UK, which supports those suffering from the illness.
Ella’s grandmother Debbie, 38, said: “One of the surgeons at the hospital said he has only seen seven cases of it in the last 21 years.
“They only test for five different things in pregnancy screenings in this country, but in America they test for 60.
“What Ella has is more common in Asia, but is still very rare here.”