GRAFTON physiotherapist Libby Nash has gone above and beyond to improve the life of teenager Lily Warren, who lives with a rare and debilitating genetic condition.

So much so that she has become the most important person in her care team, and has now been nominated for a national award.

A 15-year-old McAuley College student, Lily is one of two girls in the Clarence Valley to be diagnosed in recent years with Ehlers-Danlos Syndrome, a painful disease which causes frequent joint dislocations among other issues.
The condition is rare, affecting only one in 250,000 people and has no cure. So when Grafton Physio and Sport had two patients diagnosed within months they brought them together and worked out what they could do best to help.

In her own time, Ms Nash researched and liaised with city specialists to tailor mini gym sessions, in an effort to give them better muscle control to help joint stability.

“I had heard of Ehlers-Danlos in the past but had never treated anyone with it, so we learnt as we went,” she said.

“It’s mainly management and trying to help the kids develop postural strength and give them strategies and exercises to reduce dislocations and continue their quality of life.”

To see her efforts acknowledged, Lily’s mum Leah Montey has entered Ms Nash into the I Love My Physio competition.

Ms Montey said she was immensely grateful for the amount of time she invested in her daughter’s care.

“She gives her a better quality of life, helps to drastically reduce her presentations to the Emergency Department and her treatment helps Lily with drug-free pain relief which helps immensely with her health,” she said.

“We are so lucky because we have the best physio in the world.”

Humbled by the nomination, Ms Nash said Lily’s determination despite her condition was inspiring.

“It’s hard enough being a teenage girl, never mind having joints that pop out all the time,” she said.

“It’s a tough disease to treat but they’ve got it for life so we’ve got to do everything we can to reduce level of disability and keep them at school. It’s rare to have a teenager that wants to go to school, but Lily’s fighting tooth and nail to get there for a couple of hours a day. She’s such a great kid you can’t not help her.”

Grafton Physio and Sport’s principal physiotherapist Jane Ann Burns said Ms Nash’s dedication showed being in a regional area didn’t have to be a barrier to getting the best treatment.

“Sometimes as a physio you have to think outside the box to come up with what will best help this condition, which as yet has no cure, so part of the challenge is to keep positive and keep going,” she said.

- The Daily Examiner