Ezara-Mai Downes has been living with a debilitating muscle condition since she was four-years-old, but she refuses to let it stand in the way of living a normal life and has battled the odds to become an award-winning dancer. Stacia Briggs spoke to an inspirational 12-year-old about the power of positive thinking.
Strictly speaking, it was more about the dance moves and the outfits than the physiotherapy benefits – but 12-year-old Ezara-Mai Downes quickly realised that ballroom dancing was improving the symptoms of her one-in-a-million medical condition.
Ezara-Mai has an extremely rare condition called Juvenile Dermatomyositis (JDM) which affects the muscles and skin and can cause a range of symptoms, the worst of which is extreme muscle pain – the Town Close schoolgirl is under the care of Great Ormond Street Hospital and the Norfolk and Norwich University Hospital for her treatment, but has found her own way to cope with JDM: dancing.
A pupil at the Miller Dance Studios, Ezara-Mai had been a keen viewer of Strictly Come Dancing but made the decision to move on to the dance floor herself two years ago, inspired by the television show. Inadvertently, she found a way to help cope with the pain she experiences in her joints.
'I have bad days when I am in pain, but I make myself keep dancing – my technique might not be as good as it is on good days but moving makes me better and it doesn't feel like exercise or physiotherapy, it just feels like fun,' she said.
'Dancing helps me get stronger and my teacher, Luke Miller, is such an inspiration to me, he's one of the most amazing people I know and he understands me and knows just how far to push me, but he knows the limits. He's made me want to aim higher and higher.'
Ezara-Mai has already aimed high – and scored. She was first in her Latin and Ballroom classes at ISTD Gillingham and has picked up an awards' cabinet of prizes – later this year, she will compete at Disneyland Paris at the World Championships. The last time she visited Disney, she was in a wheelchair – it's been an incredible journey for the girl who was once too weak to join her friends in the playground.
Mum Lorna, a pharmaceutical account manager, noticed something was wrong just before her daughter started school.
'She started to go off her food and was suddenly very clingy. She always wanted to be in her buggy or to be carried,' she said.
'The first Christmas after she started school she'd not been well and despite there being lots going on and lots of excitement, Ezara-Mai was just lying on the sofa, she wasn't interested in what was going on, she had no strength. That's when I realised there was something really wrong.'
After the youngster developed a rash on her hands, ankles and knees, Lorna took her to the doctor, who diagnosed growing pains and referred her to a dermatologist who believed she had psoriasis. Meanwhile, the symptoms worsened.
'After a year, Ezara-Mai could hardly walk. I was talking to her headteacher one day and she came up to us and said 'Mum, I can't sit down'. We were going backwards and forwards to the doctor, the rash was worse and one day, when I'd been diagnosed with more cream, I went to the chemist to pick it up and was carrying Ezara-Mai. The chemist took one look at her and said 'take her to the GP now. Tell them I sent you',' said Lorna.
At an emergency dermatology appointment, Lorna was told that the initial diagnosis had been incorrect and that Ezara-Mai had JDM – the dermatologist had never seen the condition before and was having to use a textbook.
'That's when I knew how serious it was and then the dermatologist called Great Ormond Street Hospital.'
After an MRI in Norwich and tests to determine Ezara-Mai's muscle strength, she started treatment under the care of Dr Clarissa Pilkington's team at GOSH including weekly steroid treatment and immune suppression infusions delivered intravenously. The improvement was almost overnight.
'Ezara-Mai had been unable to run across the playground or take part in any of the physical activities that most young children were doing routinely because she was in too much pain. We'd gone to Disney in Florida and she'd needed a wheelchair,' said Lorna.
'She went from not going to hospital at all to being there three or four times a week. But it did start to work – before, she hardly ate at all, but when she started the steroids and was in hospital, she saw a chap with a food trolley and said to me 'don't let him go anywhere!''
While Ezara-Mai still suffers from pain and has to be careful not to over-exert herself, Lorna believes that her daughter's positive outlook has helped them both cope with living with JDM and credits her medical care and her school for their support and care.
'We always say that JDM came to live with us, we're not living with it. Normal life goes on as much as possible. Some people choose to make their lives all about their condition and their treatment, but Ezara-Mai is far too busy for that, she's got too much to do,' said Lorna, who is a volunteer ambassador for GOSH and helps to raise money for the hospital's new Centre for Research into Rare Diseases in Children..
'She never complains, she just gets on with it. I am very, very proud of her and of her incredibly positive attitude – if Ezara-Mai wants to do something, she sets her mind to it and she does it. Nothing stops her. The other day, her teacher told her that she was his hero.'
Ezara-Mai struggles to remember a time when she felt wholly well.
'I can't really remember when I first felt pain, but I also can't remember when I didn't feel it,' she said, 'I never think 'why me?' I always just think that there's no point being angry or upset about having JDM, I just need to do what I can to get better and not let it affect me too much.
'Sometimes I would have to sit on my own at playtime because I didn't have the strength to play with the other children. In lessons, teachers thought I was being naughty because I couldn't sit in one position for long without it hurting.
'I just had no energy at all and it felt like it hurt inside my bones. But to me, that was normal, it was just how it was.
'Some of the treatment I've had has been horrible but on the whole, I just tell myself that it will make me feel better in the long run and that helps – needles don't bother me anymore, when I'm having treatment, I just try and think about going home and doing something nice.'
Ezara-Mai is a keen seamstress, and makes beautiful bunting and fabric items to sell to raise money and hopes one day to make her own ballroom dancing dresses, and adores animals (she has three cats and a dog and has also kept guinea pigs) and would love a job working with them when she is older.
Her dancing not only helps her muscles, it has also become a new focus: to win the top titles and one day be just like Luke, the teacher who has never seen her illness as a barrier to ballroom and has encouraged her to reach for glitterball trophies of her own.
Additionally, Ezara-Mai is a member of GOSH's Young People's Forum which is made up of patients, former patients or siblings of patients aged between 11 and 25 who have been looked after at the London hospital and who seek to improve the experience of teenage patients.
The forum meets six times a year and offer feedback about a huge range of issues that affect patients and their families. She and Lorna also fundraise for GOSH and this year Ezara-Mai was awarded Town Close's Jude Taylor plate for Charitable Endeavours for her efforts to promote GOSH and raise cash.
'The money goes towards the best machinery and the best equipment but it also goes to help children have a better experience in hospital because when you start the journey at GOSH, you don't know where it will lead and the staff help make it as easy as it can be for you,' she said.
'I think you have a choice, to either let your illness take over and give in to it or refuse to let it beat you. I wasn't going to let it beat me.'
Juvenile Dermaomyositis
• A condition that appears in childhood, JDM is a condition which mainly affects the muscles and skin, but can affect a number of systems in the body
• JDM is extremely rare and nobody knows what causes it – doctors think there may be a genetic predisposition in some children which combines with multiple other triggers, such as infections
• Symptoms include weakness and discomfort in the muscles which develops over a period of days, weeks or months. Children may become withdrawn and miserable and may complain of stomach pain
• Other symptoms include changes in skin tone which vary from a reddening over the cheeks, eyelids, chest, knuckles, elbows and knees to a very faint discolouration over the eyelids
• Children who are affected often find it difficult to walk, climb stairs, get up from the floor or lift their arms.
• JDM is often diagnosed via an MRI of the muscles and an EMG which detects abnormalities of electrical activity in the muscles
• Treatment is generally steroid-based and can also include drugs to suppress inflammation. In extreme cases, plasma exchange may be an option. Children also need to have physiotherapy to help strengthen weak muscles
• With modern treatments, the majority of children make a full recovery, albeit over a period of several years
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