Broome fundraiser puts forward incredible prizes to help baby Rocka’s battle with genetic disease
A determined Kimberley grandmother is calling on the Broome community to back an upcoming fundraiser to spread awareness about the genetic disease which has left her four-month-old grandson seriously ill.
Napier Downs Station manager and Shire of Derby West Kimberley council nominee Linda Evans has organised a fundraiser at the Mangrove Hotel on October 16 to help her grandson Rocka, who was diagnosed with spinal muscular atrophy a few weeks after birth.
The disease is the leading genetic killer of children under the age of two, with one in 10,000 children in Australia diagnosed with the condition.
Ms Evans said she hoped to educate people about the disease in a bid to prevent other young families from suffering.
“For a baby to suffer the disease, both parents must carry the regressive gene, which can be detected in a test if people know to get checked before falling pregnant,” she said.
“It is also detectable through a heel-prick test performed on newborn babies.”
Ms Evans said the goal was to get the testing mandated.
“What we need now is to continue to lobby the government to get that testing mandated,” she said. “Awareness is key.”
The event will feature a live and silent auction with bids accepted Australia-wide, backed by donations from many businesses across the Kimberley.
Prizes include Gogo Station irrigated Rhodes grass hay, camping gear, paintings, craft beer tasting, wine cases, gift vouchers and stays in Broome, Margaret River, Port Douglas and near the Great Barrier Reef.
The live auction will offer a Horizontal Falls seaplane adventure, a $1200 side of beef, a rocking horse, a helicopter pub crawl, service fees to prime breeding mares, a male kelpie pup from top working lines, a self-propelled walk mower and more.
Ms Evans said the fundraiser would be a special evening with food, entertainment and fun.
Ms Evans said her family were now in Brisbane and enjoying a steady return to normality.
“Rocka has shown positive signs, he has movement in his fingers and toes which he did not have prior to treatment,” she said.
The live auction will begin on Saturday, October 16, at 8pm, while the silent auction will begin on Saturday, October 9, at 8pm and close on Saturday, October 16, at 9pm.
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