As Melbourne Storm continue their efforts to raise funds for The Royal Children’s Hospital Good Friday Appeal, get to know Face of the 2024 Appeal, Emily, who visited Storm’s offices to meet and greet the NRL squad.
When Emily was three and a half years old, her parents Allison and Liam noticed something wasn’t quite right. Twelve months and multiple visits to various doctors later, Emily was referred to a neurologist for her first MRI.
A single phone call confirmed she had a ganglioglioma in her brain stem, a slow-growing form of brain tumour. Relocating to Victoria, Emily and her family were immediately under the constant care of The Royal Children’s Hospital (RCH) in Melbourne.
“Where [the ganglioglioma] sits in her brainstem means that it impacts all the things we take for granted. So her swallow, her respiratory system, her muscles and nerves and lots of different bits and pieces,” shares Allison.
“Emily receives a drug every night at 9:30pm called Trametinib and we have access to it via compassionate access and her doctors had to do a lot of background work to get it for her.
“She also has MRI's every three months. She has ultrasounds for her vocal cords, and she sees respiratory doctors, gastroenterologists, neurosurgeons, and she has a PEG.
“There's lots of different departments that we go and visit.”
With Emily’s life-saving treatments and equipment costing thousands of dollars, from nightly medications to her dedicated team of professionals at the Hospital, none of the care would be possible without the unyielding support of the Victorian community and the Good Friday Appeal.
With an average life expectancy of 5 years, the world-class treatment supplied by the hospital has granted Emily and her family with an incredible extended lifespan, which has no signs of slowing down anytime soon.
“Emily is a really vibrant, gorgeous soul. She's just always full of energy, always looking at the bright side of life.” Smiles Allison.
Now ten years old, Emily thrives on living life to the fullest and most normal extent possible. Armed with her signature dry-wit and two protective siblings in Lucas and Hannah, everyone Emily meets, including the Melbourne Storm squad, is instantly drawn in by her charm.
“I think her siblings...they will help her have energy when she doesn't have energy. But not only that - they're fiercely protective of her and they will make sure that no matter what Em is able to participate or be involved in some way,” her mum continues.
“She plays soccer and loves her soccer. She's swimming, and she's just started underwater hockey, but, there are just certain sports she can't do, unfortunately. But she is out there in the community...she's very, very active little girl.”
Emily, Allison, Lucs and Hannah joined fellow RCH patients at Storm’s Round 2 Captain’s Run where they got to meet the NRL squad while also sharing the impact the Club’s fundraising efforts have on their lives.
“I think that she loved the interaction she had with all the boys and the time that that they took to come and say ‘hi’ and get to know her and give her a signature,” Allison said.
“She is super excited about seeing the game and seeing what it’s all about.”
While they may not be die-hard Storm fans, the care and interest expressed by the first-grade side quickly added the Club as a second team behind Emily’s much-loved AFL team, the Geelong Cats.
Emily and her family went on to join the Guard of Honour for Storm’s clash against the Warriors, with the squad stopping to shake hands, give some high fives and thank Emily for supporting them while they do their best to support her.
