More than anything, Kayla Burch would like to be an “ordinary” 14-year-old.
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Instead the teenager deals daily with complex regional pain syndrome (CRPS), a condition that sometimes leaves her in so much pain she is bedridden.
For her mum Penelope, watching her daughter sometimes struggle to even shower unaided is devastating.
While there is a program at Royal Melbourne Hospital that may help Kayla cope with her condition, her mother would love to take her to the USA, where so-called Calmare Scrambler therapy may help her even more.
Ms Burch has set up a fundraising web page to try to gather donations.
“It's heartbreaking because her education is suffering. She should be a 14-year old girl who is playing sport and socialising with her friends,” Ms Burch said.
Kayla’s condition first became noticeable in 2015, when she fell and hit her knee on a metal step.
She had physiotherapy and more medical appointments, but the knee didn’t completely recover and by the following year, Kayla struggled to walk.
Despite more physiotherapy, Kayla’s knee did not improve and a susbsequent MRI revealed problems.
Kayla's hyperaesthesia – an extreme sensitivity to touch – and concerns there was a mild degeneration of her lower spine, were enough for doctors to refer her to specialists at Sydney Children’s Hospital, who diagnosed the CRPS.
Ms Burch is now trying to juggle Kayla’s medical needs with raising her four other children.
“Some days are better than others. There are days when Kayla is in so much pain, she can barely left her head off her pillow,” she said.
The Scrambler’s treatment, which is offered in a number of US hospitals, has had success in improving the quality of life in others with CRPS, but it is not yet available in Australia.
“Kayla’s neurological system is reacting as though it has been badly injured, and her body keeps doing it,” Ms Burch said.
“The Scrambler’s treatment stimulates the nerve endings and encourages them to stop doing this.”
Doctors administering the treatment place small electrodes on the site of a patient’s pain and use these to transmit “messages” directly to the nerves.
During the treatments, the patient’s pain is said to decrease as the brain gets the message that there is no more pain at the original pain site.
Kayla is keen to try the treatment so she can get back to school and her friends.
To help, go to the fundraising page.
