Lyla puts spotlight on cystic fibrosis
Lyla Gillard runs into her home flashing a beautiful after-school smile and, when asked by her grandmother if she knows her words for next week's assembly, she chirps: "Yes, but they're too easy."
But easy has been far from a common theme in the six-year-old's life.
Lyla was diagnosed with cystic fibrosis soon after birth and the 70 trips since from her Gwelup home to Princess Margaret Hospital have become the road map to her life's harsh reality.
The Year 1 student will be the face of an annual Perth golf fundraiser on May 2 to launch the Cystic Fibrosis month, which includes "65 Roses Day" across Australia.
This year's guest speaker for the teams event at Lake Karrinyup will be WA tennis star Casey Dellacqua's cousin Kaila Thomas, who also has the disorder.
For the past three years, Lyla has been admitted to PMH every three months, but the regime has done little to blunt her happy persona.
"She's a real trooper, a tough cookie. She likes going to PMH and thinks it's a holiday," her mother Hayley said.
Lyla's condition causes a build-up of mucus through her body that she knows only as "sticky stuff".
Her daily routine includes half-hour physiotherapy sessions, sometimes twice a day, two nebuliser medications and 40 tablets. She also takes enzymes every time she eats or drinks.
Her mother pours antibiotics into an intravenous port under her right armpit three times a day for up to three weeks every three months, sometimes even in the car on being picked up from school.
Despite knowing that a CF sufferer's life expectancy is about 38 years, the Gillards are optimistic that research will soon provide a medical breakthrough.
"I often think that one day I'm going to wake up and I'm going to see on the news that there's a cure," Mrs Gillard said.
