Violet Rickard, 6, pictured with her mother Anna Rickard, is hoping for access to medication that could help treat the degenerative disease SMA she has been diagnosed with.
Violet Rickard, 6, pictured with her mother Anna Rickard, is hoping for access to medication that could help treat the degenerative disease SMA she has been diagnosed with. Marc Stapelberg

Violet's lifesaving drug will cost more than $125,000 a dose

A MIRACLE drug with an expensive price tag could be the difference between life and death for an Alstonville family with a sick daughter.

Violet Rickard was diagnosed with spinal muscular atrophy (SMA) type two when she was nearly two years old.

In a nutshell, it's like the childhood version of motor neurone disease and was previously considered a virtual death sentence.

The CEO of Spinal Muscular Atrophy Australia, Julie Cini, said SPINRAZA, which was recently registered by the Therapeutic Goods Administration, was designed to aid motor functions in SMA patients.

"It is an absolutely phenomenal prospect for our families and anyone moving forward in the SMA space," Ms Cini said.

Violet's mother Anna said the new drug would have the same life-changing results as another revolutionary medical treatment.

"I guess most people will be able to relate it to the discovery of chemotherapy for leukaemia," she said. "Before that discovery, children died from leukaemia and it's a similar situation for SMA."

SPINRAZA can't come soon enough for her six-year-old daughter.

"I think the toughest part of the condition is that it changes your body over time," Mrs Rickard said.

"Some things can be regained but the sooner you receive the treatment, the better your outcome will be.

"Receiving this treatment would mean that we don't have to watch our daughter lose what functions she has and it will just allow her to live with this condition rather than to die from it at an early age."

Page MP Kevin Hogan said he had spoken with the Rickard family and raised their concerns with Federal Health Minister Greg Hunt.

Mr Hogan said since the drug had been approved by the Therapeutic Goods Administration, it now needed to be passed by the the Pharmaceutical Benefits Scheme before it could be accessed by SMA patients.

The benefits scheme committee is believed to have met last month to consider listing SPINRAZA and Ms Cini said the outcome should be known before the end of the year.

"We are getting there, we are doing really well and we should know our outcome by December 15," Ms Cini said.

"Fingers, toes and everything else are crossed, double crossed and triple crossed."

Despite all this, the Rickard family seems optimistic young Violet will experience life to the absolute fullest.

"With Violet's health so unpredictable, you don't dare let yourself hope for the future," Mrs Rickard said. "You live in the moment, and make the most of each day you've been given."



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