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Family of girl with terminal illness is rushing to complete her bucket list before she loses her memory

Caitlin Passey even got to meet her musical hero Ed Sheeran at his concert in Germany and she spent over 10 minutes with him.

Family of girl with terminal illness is rushing to complete her bucket list before she loses her memory
Cover Image Source: GoFundMe

Caitlin Passey's family wants her to live her best life after they received the heartbreaking news of her medical condition. The 9-year-old was diagnosed with Juvenile Batten disease in October 2021. According to Boston Children's Hospital, the condition causes vision loss, seizures, delayed developmental milestones, behavioral and learning problems, as well as loss of language and motor skills. Vision loss is often the first symptom and can rapidly progress. Another symptom is the onset of childhood dementia, her parents noted in a GoFundMe page. The Passey family first noticed something was wrong after Caitlin started experiencing issues with her vision. Sadly, the disease is progressive, with her symptoms worsening over time as there is no known cure. But her family is determined to make sure to give her the best memories possible. 



 

 

The 9-year-old's "long-term memory will be one of the last things to go" her family said so "everything we do now will stay with her the longest. This sent us into a memory-making frenzie trying desperately to tick off all of our little girl's life's wish list." According to LBC, soon after her diagnosis, Caitlin's parents Nick and Naomi Passey and her siblings jetted off to Florida on a trip to Disney World. The Passeys are also parents to Oliver, 9, Joseph age 5, and Sophie age 2. “While we were there, we asked all the children to give us 10 things they desperately wanted to achieve or do in your life because we didn't want to single out Caitlin,” Caitlin’s father Nick, 39, said. “We just made a note of all of the stuff and over the next 10 days, we just kept revisiting it to see if there was anything else we can add on.”



 

So far, the young girl has done some incredible things like taking a trip to Harry Potter World as well as Alton Towers, Disneyland Paris and DisneyWorld Florida. She was also football player Harry Kane's mascot "on two occasions" and has met the Lionesses, as well as being a mascot for them too. "We have flown to Germany to meet Ed Sheeran (Caitlin's musical hero) and danced the night away at his concert. We are even in the top 0.5% of his fans on Spotify, that’s over 32 hours of listening time in our house, so that was a big one!" they added on the fundraiser page. 



 

 

Over the last months, the family has been getting a space in order for Caitlin that is more accessible. and "big enough for specialist equipment, a large bed, ideally with space for us to join her in her room on nights she is not settling or her seizure activity is not controlled. A den area where she can take time out, preferably with space for physiotherapy equipment to keep up her core strength and an accessible en-suite with set up for a hoist system for the future." Their fundraiser has come up with £59,200 so far. In an update earlier this month, the family revealed that "Caitlin’s eyesight has almost completely gone, much faster than we had hoped, which she is struggling to come to terms with, as I’m sure we all would! The hope was that the build would be finished by this point, but we have to look forward. We could not have got this far without the incredible help of friends, family and amazing businesses that have offered us help and support along the way."



 

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