The West Australian family of a terminally ill baby undergoing treatment in locked down Sydney is pleading for compassion from Queensland bureaucrats who are refusing to allow them an exemption to travel home together on a charity flight. Four-month-old Rocka suffers from spinal muscular atrophy type one and was driven to Sydney’s Westmead Children’s Hospital with his parents Billy Blacker and Jessie Evans to undergo treatment last month. Ms Evans’ parents Linda and Boof Evans run Napier Downs Station in the Kimberley and have not seen their grandson since he was one month old. Linda Evans said only one in 10,000 children in Australia were diagnosed with the condition. “There are children with the disease that haven’t made it through the first year of their lives,” she said. The treatment saw Rocka receive three lumbar punctures every two weeks, which would then be ongoing every four months for the rest of his life. “He’s such a tough little cookie,” she said. But while in Sydney, Queensland Premier Annastacia Palaszczuk closed the borders and the family are now on the brink of separation, as their application to quarantine at home was denied. The Daily Telegraph reported the couple requested to quarantine on their rural 300-acre property, 250km west of Brisbane, to eliminate health risks for Rocka, but the request was denied by Queensland Health on Tuesday afternoon. Linda Evans said the family were told before they departed for Sydney an exemption would be granted for them to return home, but their application was denied without reason. “The delegate who called me said they don’t give a reason for the denial but said they suspected it was because of the length of the drive,” Jessie Evans said. Instead, QLD Health ordered Mr Blacker into hotel quarantine at his own expense and advised Ms Evans to quarantine in hospital with Rocka. The family now fears for Rocka’s health as the boy’s immune system is compromised and exposure to any infection could prove fatal. “If they do what the Government wants, they would risk their baby’s life,” Linda said. Angel Flight has offered the family a private flight on a sterilised plane to an airstrip within 60km of their home. “The Angel Flight is sitting there waiting, there’s even a car to take them from the airstrip to their home and the house is fully stocked with food,” Linda said. “They have each had several negative COVID-19 tests and have met all the criteria they need, but they’ve simply been told ‘no’.” Linda Evans said the family needed to be together and return to their normal lives. “They need each other, to back each other, when times are tough you need your partner to cry on and to celebrate the little wins with,” she said. “Rocka’s condition means their lives will always revolve around his health, but this is their normal and they need to return to it. “Let my family be.” Derby will host a fundraiser this weekend, with 50 per cent of the proceeds to go towards the Ride for Rocka campaign. An auction will also take place in Broome on October 16 to raise money for spinal muscular atrophy research. Linda Evans said the disease could be prevented if people knew to get tested. “For a baby to suffer the disease, both parents must carry the regressive gene, which can be detected in a test if people get checked before falling pregnant,” she said. “It is also detectable through the heel prick test performed on newborn babies, which means treatment can start sooner if it is picked up.” She said she planned to continue to lobby to get the testing mandated.