A LIFELINE FOR FAMILIES

Disney fan Maisie Reid, six, is used to seeing princes and princesses on the screen, but her mum, Holly, never imagined she would get to meet real royalty. Yet in December 2024 that’s just what happened when the family – as well as their Roald Dahl Nurse – received an invitation to help decorate the Christmas tree at Clarence House with HM Queen Camilla. “It was so surreal, but amazing,” remembers Holly. “We spent a fantastic weekend in London. As well as meeting The Queen, we got to stay in the best hotel we have ever been in, went for a Willy Wonka afternoon tea, and travelled on our own red double decker bus that was decked out in Christmas decorations. It was so incredibly special and the best weekend of Maisie’s life so far.”

Maisie was diagnosed with Rett syndrome – a rare disorder that affects brain development, causing severe disability – in 2023, after more than three years of struggling with ill health. “In hindsight, I think Maisie started displaying symptoms from birth – when they handed her to me in the delivery suite she didn’t cry or move. I felt there was something wrong, but the doctors said she was breathing and had a good colour and seemed absolutely fine, so we were discharged.”

During Maisie’s first year, Holly realised she wasn’t hitting her developmental milestones as expected. “She could sit up for a bit but she was very wobbly, she was late crawling, and she couldn’t stand on her own. At her year checkup with the health visitor, I said I was concerned she wasn’t speaking like she should be and not hitting her milestones, but the health visitor told me she thought it was down to my inability to communicate with her. That was absolutely ridiculous but I remember tears streaming down my face, thinking, ‘She thinks it’s me, she thinks I’m the problem here.’ It was awful.” When Maisie was 18 months old, she started having episodes a couple of times a week where she would seem to black out. “It was really scary. She would just be playing happily, then her eyes and head would go back for a couple of seconds. She was given an EEG (electroencephalogram), which records brain activity and that showed she had epilepsy and was having seizures.”

When Maisie was three and a half, she was given the diagnosis of Rett syndrome following genetic tests. “Teresa was the one who gave us the diagnosis, and she had become almost like a family friend by then. I remember feeling panicked because I had heard of Rett syndrome but didn’t know much about it, and while she was talking to me, I was searching online because there were answers I needed there and then to questions I didn’t want to say out loud, about her life expectancy and how long we had.”

Rett syndrome is considered a life-limiting condition, as it can shorten lifespan due to complications, although many reach adulthood and some can live into old age. “It’s difficult not knowing how Maisie’s future will look, as we know her symptoms will change over time. She suffers from scoliosis, which we know will get worse over time, and dystonia. She can’t walk, crawl, use her hands functionally or speak. She has no way of communicating other than looking at things or just screaming until we work out what she wants. She eats orally but it’s possible she will lose that, and her muscles will become a lot stiffer as she gets older.”

Roald Dahl’s Marvellous Children’s Charity has provided Maisie with a specially designed seat called a P Pod, which provides secure and comfortable postural support for her. “We are really grateful, as it means she has somewhere comfortable to sit where she is safe if I have to briefly leave her, and it’s specially designed to support her scoliosis.”

Despite Maisie’s health challenges, she remains joyful and resilient. “She goes to an amazing school, which she loves, and she is absolutely Disney obsessed and has the channel playing all the time on her tablet. We also go out and do things and adapt whatever we are doing for Maisie, as she deserves those experiences. Having the practical and emotional support of Teresa and the rest of the charity has helped us to enjoy our lives more, as it’s taken pressure off us. Teresa has been with us every step of the way – I can call her whenever I need to, she will attend every meeting we want her to attend, and even if Maisie goes into hospital through A&E, she will come up and see if there’s anything she needs. The consultants don’t see Maisie that regularly so don’t really know her, but Teresa knows her whole story, what she likes and what she doesn’t like. She knows her as a child not just a patient, which makes such a difference.

“Before we met Teresa we were in such a dark place because we were so stressed, but her support – and the support of all the staff at the charity we have met – has brought us out of that place. They have helped us in so many ways and completely changed our lives.

“We also have a 15-year-old son, Harry, and we worried with the focus on Maisie we might lose out on Harry’s growing up and he might lose out on time with us, but I think he can feel the benefits of how supported we are – that ours is a happy house and we have a handle on this, thanks to the support of the charity.”

THE CANDIS BIG GIVE AMOUNT RAISED: £22,030

• Roald Dahl’s Marvellous Children’s Charity provides specialist nurses and support for seriously ill children. There are currently more than 200 Roald Dahl specialist senior nurses caring for over 40,000 children in UK NHS Trusts.
• The money raised in the Candis Big Give will help provide more Roald Dahl Nurses, who support families navigating multiple appointments, specialists and hospitals, and act as a consistent point of contact. They help to save families numerous journeys and time in and out of hospital, and reduce A&E admissions as families can call their nurse 24/7.
• As well as establishing the nurse posts, the charity provides an online platform where the nurses can share best practice, ask questions and support each other. It also invests in their professional development and runs an programme where nurses can bring a problem to the charity which will work with them to fund innovative solutions.
• The money will also be used to support families with emotional, practical and financial help. The emotional support includes an ear at the end of the phone for someone to talk to and a deeper counselling service.
• Visit roalddahlcharity.org for more.