Sophie's Story
Meet dancing queen Sophie!
Dancing has been Sophie’s passion since she was three years old. But at just 11, everything changed. Aches and pains crept into her body – at first mild, then unbearable. What started as discomfort soon became something far more serious.
Mum Lorraine says, “Doctors said it was just growing pains, but it got worse, much worse. After about a year, the aches became agony. You couldn’t even touch her without her crying.”
“One morning, she woke up and couldn’t walk. She was in so much pain. We rushed her to hospital, and the tests showed her inflammation and infection markers were dangerously high. But no one knew what was wrong.
The pain, the treatment, the hospital stays - it all took a toll. She lost her confidence. She had to stop dancing.
Lorraine, Sophie's mum
“That was the first night we were ever apart as a family. I’ll never forget lying in the hospital ward with Sophie, both of us crying, missing home, not knowing what was ahead.
“She went through every test you can imagine – MRIs, ECGs, you name it. At one point, doctors thought it could be cancer. Hearing that word in relation to your own child is something I wouldn’t wish on any parent. It was terrifying.
“Finally, we got an answer: Systemic Juvenile Idiopathic Arthritis. But this wasn’t just joint pain – it was her whole body. Even her organs were inflamed. That was the start of the hardest year of our lives. Sophie was in and out of hospital constantly.
“Then, things got even worse. She developed Macrophage Activation Syndrome – a life-threatening complication that caused her organs to start shutting down. For two days, we thought we were going to lose her. The longest, most agonising days of my life.
“She spent six weeks in hospital before they found a treatment that made her stable enough to go home. They put her on steroids, which took the inflammation down but changed her body. Her face became puffy, which was a shock for her. She struggled with the rapid changes in her appearance.
“Before all this, she was so full of life, always dancing, always happy. But the pain, the treatment, the hospital stays – it all took a toll. She lost her confidence. She had to stop dancing. She hardly recognised herself.
“Through all of this, we found the Hub. I don’t know what we would have done without it. I don’t know how we would have coped. For Sophie, the Hub became a safe space. She’s naturally quite shy, but with the ECHC staff and volunteers, she felt at home. They became her friends.
“For me, it was a lifeline. It was our support system. There were times we were in hospital for weeks, when everything was so uncertain. Being able to go to the Hub for a chat and a cup of tea- it lifted my spirits in ways I can’t even explain. Without it, I don’t think we would have gotten through it as we have.
“Two years on, our Sophie is back. Not just back on her feet, but back dancing. Not just ballet, but jazz and hip hop too! Her smile came back. Her resilience will never cease to amaze me.
“Hospital visits don’t scare her anymore. They’re just part of life now. And every time she comes in for an appointment or for treatment, she looks forward to going to the Hub – catching up with the people who she got to know over the years.”
