Battens disease affects only one in 40 children in the UK every year, and David just couldn't understand why his daughter had to be one of them.
Adelei Clarke is a four-year-old girl who was busy daydreaming, just like any other kid her age, thought her parents. She was a bit clumsy as well, but no one thought that these were symptoms of childhood dementia, aka, Batten's Disease. The little one suffered her first seizure this year in May, which lead to her diagnosis. Her parents, David, 35, and Hayley, 36, were heartbroken to find that there are chances of her dying before she turns 10. She could also lose her sight and forget her parents by the end of the year. "When Addy's symptoms first started, we just thought she was just daydreaming. The lights would be on but nobody would be home," said David, a youth worker.
"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. Thankfully she expelled some of the fluid and took a big gasp of air, it was just as the paramedics walked through the door."
She was rushed to the Great Western Hospital in Swindon but was transferred to John Radcliffe Hospital in Oxford, where she ended up having about 17 seizures a day. MRI scans showed her brain was underdeveloped. So, doctors carried out more tests and David was called in when they had her results. "When I got there, the first thing he said to me were the words: "I'm very sorry". That was like a punch to the gut. 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."
Doctors also informed him about how she would lose her sight, adding she would be in a vegetative state by age seven and likely dead by the age of 10. "There's no cure. No magic drugs that'll let her live a normal life for a bit," said the distraught father. "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?"
Batten disease affects only one in 40 children in the UK every year, and David just couldn't understand why his daughter had to be one of them. He revealed that he's only ever heard his daughter say her name twice, and he says he might never be able to hear her tell him that she loves him. However, David says the hardest thing he had to do was explain the situation to Adelei's seven-year-old brother Samuel. "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. Ever since we told him he's done his best to be nice to her."
David added, "He's only seven but he's shown a maturity beyond his years." A GoFundMe page has been set up to raise funds for all the medical expenses. She's set to undergo brain surgery on 14th October. Following surgery, she will need to travel to Great Ormond Street Hospital to receive treatment every two weeks for the rest of her life, which may only be another 4-6 years. Heartbreakingly, the disease will limit her life to between early childhood and young adulthood at best. This funding campaign seeks to help Addy and her family, (Dave, Hayley and Samuel) in supporting them in a significant financial challenge. Click here if you wish to donate and help them out.