A Gold Coast toddler is battling an extremely rare form of cancer, making her one of the few children diagnosed with the disease in the world, but her family faces a new battle to get the 20-month-old overseas to receive the specialist care she urgently needs.
Goldie’s journey began when she began to lose her motor skills, going from almost taking her first steps to completely unable to bear the weight and collapsing.
The family repeatedly expressed concerns and requested images, but they were not provided until months later when the situation changed.
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Goldie, affectionately known as ‘Golden Bean’, was rushed to hospital in a critical condition, where scans revealed a large tumor pressing on nerves in her spine.
“We just found out that our daughter has cancer, which is not only the rarest cancer in the world, but a very aggressive cancer of the spine and pelvis,” her mother and former Jillaroo member Madison Bennett told 7NEWS.
The extracranial malignant rhabdoid tumor was diagnosed before the infant was two years old, and the girl underwent emergency spinal surgery.
The bright and cheerful girl has already endured four rounds of chemotherapy and now urgently needs radiotherapy.
“Irradiation for a 20-month-old baby is obviously high intensity and can have lifelong effects, so we’re trying to get her the best possible treatment, and that’s not really being done here in Australia,” Mr Bennett said.
Because her case is so rare and almost unheard of, Goldie has been mired in red tape in the health care system, delaying her access to life-saving treatment overseas.
“We feel like we’ve let ourselves down as a family,” Bennett said.
“So we have no choice but to do it ourselves.”
The family has to rush the treatment as Goldie needs to undergo specialized proton beam therapy in Singapore next month and will need help to get there.
Proton therapy is a more advanced form of radiation therapy that stops radiation at the tumor site and reduces radiation exposure to surrounding healthy tissue.
They are Donation page We can help you with access to treatment, emergency travel, extended accommodation, and medical insurance costs.
“She’s a fighter and deserves every chance,” Bennett said.