Adelei Clarke from England has Batten's disease, that doctors say could lead to memory loss and death by the time she turns 10.
Parents of a girl in England are devastated that their daughter is one of 40 kids in the country, and 100 in the world, to have a rare disease that is akin to childhood dementia, reports Daily Mail. Called Batten's disease, doctors have said that Adelei Clarke could lose her sight by the end of the year, not remember her parents, deteriorate into a vegetative state in the few years to come, and ultimately die by age 10. Her parents, David, 35, and Hayley, 36, had no clue that their 4-year-old daughter was sick until she had a seizure and was rushed to a hospital a few months ago. But the signs were always there. Adelei seemed a little clumsy at times, her parents would also see her staring into space and thought she was just "daydreaming." It was not until the girl's grandparents told them that the girl looked "vacant" that her parents really though there was a serious problem.
David said, "When Addy's symptoms first started, we just thought she was just daydreaming. The lights would be on but nobody would be home. She'd fall over and we wouldn't think anything of it beyond "she's clumsy." She didn't learn to talk at a normal rate so we took her to a speech therapist. They just said she was one of those kids who wouldn't stop talking once she grew up. But there would be times when other people would say things – the first time we really considered the possibility that something could be wrong was when her grandparents said she looked unusually vacant. Then she had her first seizure in May. There was a point where she didn't take a breath of air for 30 seconds until I remembered my first aid training and gave her the Heimlich maneuver."
He added, "Thankfully she expelled some of the fluid and took a big gasp of air, it was just as the paramedics walked through the door." Adelei was first treated at the Great Western Hospital in Swindon. Then, she was taken to the John Radcliffe Hospital in Oxford, where she had 17 seizures in the ten days she spent there. Doctors carried out more tests and David was finally given the bad news by a pediatrician. David said that the doctor's first words to them were "I'm very sorry" and it was "like a punch to the gut." He added, "I knew Addy was terminally ill just from the tone of his voice. He said: "I hate to be the one to tell you, but your child has Battens. I had no clue what Batten was but I could tell it was horrific, so he filled me in."
The Great Ormond Street Hospital is the only hospital in the country that treats the disease, so David rushed there the same day he found out his daughter had Batten's. That's where doctors told him that his daughter would deteriorate in the years to come. "There's no cure. No magic drugs that'll let her live a normal life for a bit. When he was telling me all that it was like an out of body experience, it didn't feel real. Ever since she was born, my only dream was to walk her down the aisle. I didn't care about her being a doctor or a lawyer, I just wanted her to be happy and healthy. All those dreams I had died in that moment. All I could think is was "Why me, why her? Why do we deserve this?" I just couldn't believe what I was hearing. Battens only affects around 40 kids in the UK, why did Addy have to be one of them?" said David.
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Adelie has an elder brother, who is equally saddened by the news. The couple had to sit down with 7-year-old brother Samuel and break the news to him. "Telling her brother was the hardest thing we've ever done. We sat Samuel between us on the bed and told him that Addy's brain wasn't working. He asked us if he'll ever be able to talk to her properly, and we said no. He just looked down and didn't say anything." A GoFundMe page has been set up for the family to cover the "cost of travel" for the girl, that would come to £3,600 ($4,694) from Swindon to London on a fortnightly basis, besides other costs. The page also read, "the future costs for home environment adaptions and education. Alongside the emotional and practical impact on the family life, the economic strain will increase as parents lovingly take on a full time caring roles."