Only the seventh case diagnosed in the world, two years ago Sophie fell ill with pineoloblastoma, a rare form of brain tumour.

“She was sick on and off for weeks,” her mother Rebecca said.

She was admitted to John Hunter Hospital where surgeons made two unsuccessful attempts to remove the tumour before transferring her to Westmead. There she remained for the next 11 months, along with her parents Rebecca and Robert and four siblings, the eldest of whom was then nine years of age.

Sophie’s tumour was successfully removed but her treatment was followed with intensive chemotherapy, during which the family resided in Ronald McDonald House. Rebecca and Robert took turns by Sophie’s bedside, while their other children attended the hospital school and took advantage of the support services provided by the Starlight Children’s Foundation both after school, on weekends and during school holidays.

“It was a major help in distracting the kids from Sophie’s situation,” an ever-grateful Rebecca said, citing craft, video games and clips for Starlight TV and books amongst the activities on offer in the hospital through the Starlight program.

“They became part of our family. The Captains helped and talked to the kids, explaining what was going on...They would also visit Sophie,” she said, adding that when Sophie sees them now during her checkups, she runs to give them cuddles.

“We would have been lost without Starlight.”

Rebecca said they also counselled her eldest daughter, who had become very close to an eight-year-old cancer patient who passed away.

“Starlight is a blessing for all families.”

The Grills family now travels to Westmead every three months for checks and catches up with the Captains each visit. In a wheelchair, Sophie is learning to walk and talk again with therapy two to three times a week. She also has a visual impairment. But despite her challenges, she is known to be “always smiling” and is known for her strong will and determination. And though the future is unknown, her family is hopeful.

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This Friday, May 6, the Starlight Children’s Foundation is launching its major annual fundraiser, appealing for help to raise the $1.3 million it needs to brighten the lives of more than 33,000 seriously ill children and their families around Australia. Found in all major hospitals across the country, it covers a range of services– the Starlight Express room, a medically free providing ‘distractive therapy’ for sick children and their siblings; a wish granting program around Christmas time; an online hangout space for teens to get pastoral care support. A family relationship coordinator also supports the family through their journey.

To help Starlight reach its fundraising target, individuals, corporations, schools, universities, sport and groups are invited to register to host a Star-BQ – a special fundraising barbeque – on Starlight Day or anytime during May. About 2,000 purple and yellow-clad volunteers will also hit the streets across the country on Starlight Day, selling Starlight merchandise and collecting donations in shopping centres, central business districts and train stations.

Starlight relies solely on the community to deliver and evolve its innovative hospital programs, which were developed to complement the Australian healthcare system.

For more information please visit www.starlight.org.au, or join the conversation online using #starlightday #snagasmile.