A book for bedtimes – Ezara-Mai's story

When Ezara-Mai was six years old, she was diagnosed with juvenile dermatomyositis (JDM), a rare condition that affects her muscles and skin - but she's never let her condition hold her back.

In her early school years, when the pain was at its worst, Ezara-Mai was unable to sit down in class and would often feel exhausted and in pain. Now 12 years old, she holds an under-16 world title in Latin ballroom dancing (in the Junior Closed Pro-Am category), enjoys many extra-curricular activities, and raises money for Great Ormond Street Hospital Children’s Charity – all while regularly attending Great Ormond Street Hospital (GOSH) for treatment.

Ezara-Mai is also a member of the Young People’s Forum (YPF) at the hospital, and she recently organised the creation of a book of animal stories at her school inspired by the wards at GOSH. Here, she tells us about her journey to GOSH and beyond. 

A long road to diagnosis

“When I was first diagnosed, JDM had a real impact on my life,” explains Ezara-Mai. “I must have been about five or six years old, but we think I’d had it for at least a year or two before that. Because I was so young, I couldn’t explain how I was feeling and I gradually became worse and worse.

“The teachers at school would think I was just being really naughty, because whenever they told me to sit down I would fiddle around with things. In reality, I just couldn’t physically do it. As I grew, it got to the point where I could explain and I said to my mum: ‘I just can’t sit down. I can’t sit on the floor.’

“One day, I was really bad, so we went to see the doctor. He immediately sent me to the hospital for an emergency appointment. Once there, the doctor looked at me and said: ‘You must be in so much pain. You have juvenile dermatomyositis.’ From there it was all systems go and I was referred to GOSH.”

Coming to GOSH

“At first, I was in hospital very often, for about a week at a time. I was put on medication, and gradually I’ve improved. My JDM will never completely go – it just sort of has its moments. One day I’ll be okay and then the next I’ll be bad again, so I’ll have to take more medication to sort it out. 

“So many people think of hospitals as bad things, but I only really have happy thoughts about GOSH.  It feels homely and all the staff, nurses and doctors are lovely. I also really love the food – every time we go, my mum will ask: ‘Where shall we go for lunch?’ and I will always say The Lagoon! 

“Everyone at GOSH is going through their own challenges, but there’s no reason to be frightened – everyone is there to help.”

Fundraising with fairy tales

Ezara-Mai has taken part in many fundraising events for GOSH, including Bake it Better, donating money from dance competitions, and most recently creating a book of animal stories to sell at school.

“I know that the children sometimes feel like there’s not always a lot of things to do while they’re on the ward,” says Ezara-Mai. “I thought if they had some stories, they could read them before they go to sleep, and the money raised from selling the book could go towards new things to help them get better.”

Ezara-Mai asked her English teacher at school to help her organise the project. In the end, Ezara-Mai’s friends and fellow pupils wrote 13 different stories, all inspired by the names of the wards at GOSH. “I thought that the names of the wards might provide some inspiration to the children. Sometimes, when you first write a story, it’s really hard to think of a topic!

“My favourite story was written by Sophie in year three. She wrote a story about a kingfisher, and I thought it was really well written considering she’s so young! I also really like the story written by the school council, inspired by Elephant Ward.” 

Living life to the full

“Because of my condition I never really did sport at school. One night, I was watching Strictly Come Dancing on TV, and I decided I wanted to try it. I do a lot of things in my dancing that I would do in my physio sessions, and I enjoy it as well. I’ve made lots of friends and I like competing.

"In December last year, I travelled to Paris for a competition and won the world title in under-16 ballroom Latin. That’s one of my main achievements!”. Since she started dancing, Ezara-Mai has noticed her JDM has become a lot better. “Dancing pushes me, but not to a point where I can’t take it anymore.”

“Ezara-Mai has taken lots of positives from her experience at GOSH,” says Ezara-Mai’s mum, Lorna. “She’s made lots of friends in the YPF and gained lots of different experiences through raising money for the charity. She has confidence in GOSH and sees it as a magical place.”

Great Ormond Street Hospital Children’s Charity will be sharing one of Ezara-Mai’s stories online each week in the lead up to world storytelling day on March 20. Find out how you can get involved and fundraise for GOSH.