THE Western Australian campdrafting family, boosted by the wider community, came out in force to support one of its own at a charity event on New Year's Eve, raising more than $45,000 in the process.
The Ride for Rocka event, organised by the Boar Swamp Campdraft Club at its Boar Swamp Road grounds, Blythewood, was held to raise money for seven-month-old baby Rocka Blacker, who was born with Type 1 Spinal Muscular Atrophy (SMA), an incurable muscle wasting disease similar to Motor Neurone Disease in adults.
Rocker's mother Jessie Evans, the daughter of Kimberley pastoralists Boof and Linda Evans, Napier Downs station, Derby, was a regular competitor at junior campdrafts while at school at WA College of Agriculture, Harvey and a former WA/New South Wales campdraft youth exchange representative.
She and her partner Billie Blacker, who now live near Dalby in Queensland, away from the support network of family and friends, have been negotiating their way through expensive treatments and frequent hospital visits as they try to combat the disease which will likely claim their first born's life before he turns two.
Annabel Curtain, whose father local farmer and Boar Swamp Campdraft Ground owner Leigh McLarty, Blythewood, Pinjarra, sparked the idea for the charity event which included her husband Golden Guitar singer/songwriter Tom Curtain, who performed on the night, spoke on behalf of the Evans and Blacker families who were unable to attend due to COVID-19 restrictions.
"We are here tonight for Rocka James Blacker and his family, to raise awareness about SMA and hopefully save another family from the heartbreak they have endured," Ms Curtain said.
"SMA is the biggest genetic killer of kids under two, in fact one in 10,000 babies are diagnosed with it.
"It is now believed that some 45 per cent of deaths previously attributed to SIDS were actually SMA.
"A staggering one in 35 adults carry the defective gene but will have no idea unless they partner with someone who also carries the faulty gene, in which case their children will have a 50pc chance of being affected by SMA.
"SMA affects the nerves in the spinal cord which control all muscle movement of the body, including the muscles for head control, arm and leg movement and the actions of breathing, coughing and swallowing.
"Without treatment Rocka's life expectancy was just six months but with Pharmaceutical Benefit Scheme (PBS) treatment he may make 18 months."
The treatment, which Rocka has undergone, entails an injection into the spine every three months costing $110,000 per treatment.
He has also just been through a United States-based program costing $3.1 million, only the third baby in Australia to do so.
"It's not PBS listed and had to be paid up front so the financial burden on the family has been huge," Ms Curtain said.
"Since the treatment, Rocka has gained some movement in his hands and feet."
But it's the impact his life is having on the Australian medical system that will long be remembered.
"Thanks to the relentless lobbying of the Evans family, SMA is now included in the newborn heel-prick screening test in all States (prior to this it was only recognised in Victoria) and the revolutionary gene therapy treatment that Rocka received will be funded by Medicare from tomorrow, January 1, 2022," Ms Curtain said.
"The next step is to have it included in the harmony test available to expectant mothers."
The evening included a three course barbecue dinner, entertainment from singer/musicians Tom Curtain, Chris Matthews and Kate Hindle, plus local band Sweet Sister and the charity campdraft which was won by 82-year-old drafting legend Henry Clifton, Boyanup, riding Haycliff Foxy.
