Little Caitlin Passey is just 9 years old, but she is already facing a tough battle with Batten disease – a neurodegenerative condition that limits the ability to walk, talk and see and can cause dementia. However, even with this difficult diagnosis, the girl, who is a soccer player, did not give up on fulfilling her dreams and, therefore, made a wish list to make the most of her time in life.
Caitlin, who lives in England, started showing the first signs of the disease during the lockdown during the pandemic. Her parents, Nick and Naomi, who have three more children, began to notice that their daughter was bumping into objects in the house a lot and was having trouble seeing, so they decided to take her for a medical evaluation.
In an emotional account, Naomi shares how she received the diagnosis: “I was home alone when the email arrived. It said, ‘This is more complicated than I think you expected. Diagnosis- Neuronal Lipofuscinosis (Juvenile Onset) CLN3 Mutation ‘ I had no idea what it meant, so I googled it. I thought, ‘This can’t be right? They can’t be telling me my daughter is going to die, over email?'” she said. “I emailed back and when I finally got through to the geneticist he kept saying he was sorry. He said it looked like Batten’s disease which would mean it’s terminal but couldn’t say if she would die. He said told me I needed an urgent referral to a neurologist,” he reported.
According to the mother, receiving this news was desperate. “When I hung up the phone, it was howling. How could my daughter suddenly go from being perfectly healthy, go blind, and (me) be told she’s going to die? And no one could tell me if it was true? I told Nick to come back from work and when he came in I remember saying: “She’s going to die”. Soon after, the family received the news that it was Batten’s disease. At the time, specialists warned the family that the patient could develop childhood dementia and, at 15 years, having to use a wheelchair.
Doctors also told the girl’s parents that the experiences of this period of her life will be the final long-term memories she will keep. Faced with this difficult news, Caitlin’s family decided to use all their savings to travel the world with the little girl and make the most of the time she still has in her life.
One of the little girl’s wishes was to meet her great idols and she did it! The little girl met the players of the English women’s football team, Lionesses. In an interview with SubwayCaitlin shared what it was like to experience this moment: “It was amazing to meet the Lionesses after seeing them trainr, especially my hero Leah Williamson, because it was brilliant to see them win for our country. She’s a defender like me, she plays very well and she’s captain of the England team. My dad also told me that she has some health issues so that inspires me even more because she doesn’t let that get in her way.”
Caitlin has been playing since she was five along with her friend, Lily. Recently, her family created a team for the girls to have the opportunity to play and they have since joined the long list of Lionesses in the making. The child player says that her friends are very understanding about her condition. “I just try my best. Since I don’t see very well, I play with a bell ball that I hear when it’s moving. Sometimes I get a little confused with all the noise and the game being so fast that it can make me upset , but I just try my best,” she said.
Race against time
Family friends have gone out of their way to support Caitlin since her diagnosis. A friend of the girl’s father managed to get in touch with Daniel Radliffe (actor who played Harry Potter) and the actor sent a video message to Caitlin.
Currently, Caitlin’s family is working hard to make their home comfortable for the little girl, including the parents are already thinking about building an elevator. For this, they created a fundraising campaign, called SafeHaven4Caitlin. To the Subway, Nick and Naomi said their daughter is very brave and determined and faces any challenges ahead without fear. For Caitlin, she wants nothing more than to spend more time with her idols – and to help foster understanding. “I would love to spend more time with Leah Williamson and Harry Kane (footballers) but I’m desperate to meet Daniel Radcliffe because I really love Harry Potter,” said the former former Ed Sheeran. “I want to thank everyone for helping me. , it makes me feel special and I wish people would take more time to understand that some people just need a little more time sometimes.”
Caitlin’s wish list is long, however, her parents are committed to fulfilling each of their daughter’s wishes, check out some of them:
Meet the Harry Potter cast, especially Daniel Radcliffe; see Katy Perry live in concert and meet her; visiting Italy, having your own room with a double bed, TV and Harry Potter themed decorations, traveling with your best friends; have one of your stories published in a book; skiing and visiting California Disneyland.
What is Batten’s disease?
Batten’s disease – also known as neuronal ceroid lipofuscinosis (NCL) – is the name for a group of inherited disorders of the nervous system that usually begin in childhood. Symptoms often include: progressive vision loss leading to blindness, seizures, movement disorder, dementia, developmental skills such as standing, walking and speaking may not be achieved or are gradually lost.
Other symptoms that continue to get worse over time include learning difficulties, poor concentration, and progressive loss of language and speech skills.
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