Marc Stapelberg

"I won't bury my child" - miracle drug put on PBS

UNTIL last week, Natayla Brunsdon, 5, and Jye Grainger's, 13, life expectancy was 37 years old.

The Evans Head relatives both suffer from Cystic Fibrosis (CF), a life threatening genetic condition affecting organs such as the lungs and pancreas causing irreversible damage.

The only drug available for treatment, Kalydeco, cost $300,000 per person, per year - a price well out of reach for most families.

But after two years of campaigning by the CF community, the "miracle" drug was finally added to the Pharmaceutical Benefits Scheme last week, making it affordable to access.

For mums Taysha Butler and Karen Grainger, the announcement was almost too good to be true.

"What it means is I won't bury my child," Ms Grainger said.

"I've been crying on and off (since I found out).

"It's just so unbelievable they've done it.

"We weren't going to believe it because we thought we had it a few months ago and it fell through.

"It was just so frustrating for us, because if you were rich, you could save your children's life."

Ms Butler said after years of campaigning, it was hard to accept the drug would finally be subsidised.

"By the end of the day I finally believed it, and I was a little overwhelmed," she said.

Ms Butler said the biggest benefit of the CF drug was the amount of time it would give her and her husband with Natayla.

"The main one is we're going to get more time with her," she said.

"Second one is we're actually considering having another baby now, whereas before we would have either not had one or had to go through IVF."

But the victory is bittersweet.

Kalydeco only treats the specific gene mutation G551D which affects 8% of the CF community in Australia.

Fortunately, Natayla and Jye were two of the 250 Australians to win the Kalydeco "gene lottery".

But both Ms Butler and Ms Grainger said they were worried people would hear about Kalydeco and think fundraising was no longer necessary.

"We've got to remember and stress that it's not a cure."

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