Kyla

Our daughter Kyla was doing high jump at school when she got tangled in the bar and landed on the top of her foot.

She had her foot in a moon boot for a few months and used crutches and a wheelchair.

Even a gentle touch to comfort her, in the area where it hurt, would feel like she was being hit with a hammer, and the skin of the affected area turned a different colour.

A few months later she was diagnosed with Complex Regional Pain Syndrome, a chronic nerve pain condition.

We had never heard of it before, and had it not been for a doctor walking past while we were waiting for an appointment, we might have been searching for an answer for a long time.

We were lucky to be referred to the only peadiatric pain specialist in Queensland, at the Royal Brisbane & Women’s Hospital, who helped us understand Kyla’s condition is the result of faulty wiring in her nervous system.

There is nothing physically wrong with Kyla, so her treatment focuses on cognitive behavioural therapy and learning desensitisation techniques to perceive the pain differently, as well as physiotherapy.

She has group sessions with other children and has met with counsellors and other therapists, through the Royal as well as a program for children with chronic pain called SKIP.

Despite her pain, Kyla has continued with Irish Dancing—something she loves. It helps her disassociate from the pain and is an important part of her therapy.

The biggest issue for Kyla is people who don’t believe she is in pain. Some teachers still don’t understand why she can’t participate in sports, even though they know about her condition.

Another issue is the pain makes no sense. One day is good, the next bad, and the pain intensity can change from one minute to the next.

But Kyla has a lot of motivation and determination, so she just keeps living life.

As parents, we feel helpless and wish we could make her better, but we are so proud of the way she has coped with it.