TEARS were never far away as Rockingham mum Trilby Glen spoke about her children’s battle with cystic fibrosis.
Three-year-old Eason and Kiah, 11, were diagnosed with the condition as babies, although there is no family history of CF.
When told that firstborn Kiah would be lucky to make it to 33, Ms Glen was devastated.
“To have someone tell you that when you are holding this tiny baby, it changes everything,” she says.
“My daughter has been through hell and is still suffering.”
Voice quivering, she described the torment of Kiah’s more than 20 hospital stays, sometimes for weeks, and the painful and invasive treatment needed to keep her alive.
“And all the anxiety that goes with that. The needle phobia and having to go under anaesthetic again and again.
“At her last admission she was very sick and said ‘mum please take me home’.”
Ms Glen added that Eason and Kiah have had to be hospitalised at the same time.
Parents of kids with CF and Cystic Fibrosis Australia had a win this week, with federal health minister Greg Hunt announcing that life-changing drug kalydeco would go on the pharmaceutical benefits scheme for kids aged 2–5, and would be free until becoming available on May 1.
With a price tag of $300,000 a year it had only been available to kids six and over, by which time young lungs have often been ravaged by the disease.
“This early access scheme ensures that little lungs stay healthy,” CFA head Nettie Burke said.
The announcement is a huge reprieve for young Eason, whose lungs aren’t showing the ravages of the disease yet, his mum says.
The government is yet to strike a deal with drug company Vertex over a second CF drug orkambi, which treats the disease and not just its symptoms.
“The availability of kalydeco is marvellous news, but we must not forget the more than 1000 Australians who still wait to gain access to…orkambi.”
by JENNY D’ANGER