Wish stories

Daisy lives with Kcna1, a genetic condition. As Mum told us, “It's a brain function disorder that causes epilepsy.” On top of this, Daisy has also been diagnosed with a multi system disorder, a condition which causes several health issues for Daisy. So far, Daisy is the only person known to have both Kcna1 and a multi system disorder.

The impacts of her condition are many: with Daisy being unable to breathe unassisted, she requires 24/7 use of a ventilator; whilst she can eat food, she isn’t always able to so requires a feeding peg to get all the nutrients her body needs; muscle weakness requires her to mostly use a wheelchair to get around, though she can walk for short periods on her own.

Having been diagnosed at three weeks old, Daisy is accustomed to life with her condition and knows no different. However as Mum explained, this isn’t always good: “In her mind, there's nothing wrong with her, but she wants to do things that she thinks she can do but can't. She always has to have an adult with her, so she misses out on one-to-one time with her peers. She can only spend one-to-one time with her sister.”

Older sister Freya, age ten, is equally affected by Daisy’s condition: “We have to cancel things, we can't go certain places as I know Daisy won't like it.” Despite being a tight-knit pair, Daisy’s condition separates them with the two having never slept in the same room due to Daisy’s needs. But as Mum said, “Daisy is so lucky to have a sibling like Freya who is like a mini advocate for her.”

Whilst Daisy’s condition will continue to impact her future, her family is keen for her to embrace all the activities that she loves. “She’s a little adrenalin seeker and loves watching Disney films,” said Mum.

Mum was referred to Make-A-Wish by a nurse at Unity Care Solutions, a referral partner of Make-A-Wish. A trip to Disney was the obvious choice for Daisy, who loves Donald Duck. “One of her favourite characters is Donald Duck. Her favourite animal is a duck! She says ‘duck’ when we see one!” said Mum.

With Daisy’s condition making it hard for the family to travel, Mum was overjoyed to be able to have Make-A-Wish organise the often-challenging logistics for her: “The process of applying for the wish was the easiest thing I’ve ever done. Going abroad is so hard for us, there are so many logistics. But Erica, her Wishgranter, sorted it all out for us! From the start to the end of the process, it was superb!”

On the 26th of April 2024, the trip down to Disneyland Paris from the family home in Aylesford kicked off. Mum was in disbelief: “I was so shocked that it was actually happening!” Even the trip through the channel tunnel was exciting for the family of four. As Mum told us “She's only ever used an ambulance, so going on the shuttle was so special.”

During the trip, Daisy delved into all that Disney had to offer: She was able to have a blast on rides with her family and meet her favourite character Donald Duck!

Daisy was also excited to be able to share a bunk bed with older sister Freya, something she had never done before! For older sister Freya, being part of the park’s parade was a highlight that she’ll remember in years to come.

The wish marked the first time in six years that the family could spend time together away from doctors and nurses, providing needed family bonding. As Mum shared: “We have always had a nurse at night and in the day. The wish brought us closer together because there was no one else. It was so special to have that time alone in such a fun environment.”

For families like Daisy’s, living with a critical illness can place restrictions on what they can do, with logistics for trips seeming almost Impossible to deal with. But as Mum told us, “The wish makes it possible to do the things we otherwise wouldn’t be able to do by dealing with the logistics! Thank you so much to everyone who has supported Make-A-Wish. Daisy’s wish brought us closer together as a family and we’re so grateful for that!”