“There’s no cure. No magic drugs that’ll let her live a normal life for a bit.”
It is a beautiful feeling for many parents when their child comes into this world. From watching their child kid the bike for the first time, graduating high school, going to college, getting their first job, finding love, they want a long and healthy life for their baby. But sometimes, reality strikes in the harshest of ways, and dreams get crushed.
The couple from Swindon in this story got their dreams crushed when they heard their daughter’s diagnosis, according to Daily Mail. When 4-year-old Adelei Clarke suffered her first seizure in May 2020, her parents David, 35, and Hayley, 36, immediately rushed her to the doctor. It was there that they discovered that their daughter had a rare condition called Batten’s Disease.
David said that the doctor’s first words to them were “I’m very sorry” which 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 doctors said that Adelei 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.
But the first signs that Adelei had Batten’s disease showed up years ago, says her father in hindsight.
He 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.”
Continuing, he said, “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.”
The day Adelei was diagnosed, David went to Great Ormond Street Hospital in London because it is the only hospital in the country that deals with the disease.
The doctors there told him that his daughter would progressively 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.
Perhaps what was just as difficult for the parents as this news was breaking this news to Adelei’s big brother, seven-year-old Samuel.
“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.”
Samuel has been extra nice to Adelei since then. David said, “Ever since we told him he’s done his best to be nice to her. The other day he even gave up the TV so she could watch Peppa Pig – it was unheard of! It’s an awful situation but I’m so proud of how he’s handled it so far. He’s only seven but he’s shown a maturity beyond his years.”