Good Friday Appeal 2024 - Meet Emily

Ten-year-old Emily is the bubbly heart and soul of her family of five. She loves playing cricket and soccer, is quick to make a joke and adores spending time with her friends.
Emily was three-and-a-half-years-old when her parents Allison and Liam noticed something wasn’t quite right. Their toddler would often catch herself on the sides of doorways, water would come out of her nose, and her speech was not developing as they expected. Emily was referred to an ear, nose and throat (ENT) specialist, and her parents continued to monitor her closely.
Twelve months later, Emily was still having trouble swallowing. She was experiencing tremors and having difficulty walking in a straight line. She was referred to a neurologist and had an MRI.
“I remember the phone call coming in, and I looked at my phone, thinking that was odd. I remember the neurologist saying we found something and needed to bring her back and check how fast it was growing. I remember trying very hard not to cry on the phone,” Allison said.
The neurologist said they had found a lesion in Emily's brainstem that was presumed to be a slow growing glioma, a type of brain tumour.
The family returned to Victoria and Emily's paediatrician put them in touch with neurologists at The Royal Children’s Hospital (RCH). They connected Emily’s family with other specialists across the hospital including oncologists, ENT, respiratory doctors, gastroenterologists and dieticians.
Here they finally found some concrete answers about Emily’s condition. Her lesion is a very rare type of glioma brain tumour called a ganglioglioma. The location of Emily’s tumour is not only the most difficult part of the brain to operate on but also the most dangerous as it controls almost everything her body does. She has undergone two craniotomies to try get enough of the tumour to provide more targeted therapy. Despite the risks of these procedures, Emily takes everything in her stride.
"Usually if you have a problem, you make a plan to fix it but this is brain cancer and it’s likely going to be there for the rest of her life. We just have to try find some semblance of normality for her,” Liam said.
Although she has spent much of her young life at the RCH, Emily does not let her condition interfere with living her best life. The team at the hospital have watched Emily grow from a tiny six-year-old, into the amazing 10-year-old she is now.
“They are some of her biggest supporters and walk alongside us to advocate and assist Emily living the best life she can,” Allison said.
“This experience has left a lasting impact on our whole family. It has not been easy but it has taught us how to step back and be present in the moment.
“It has brought into our lives some amazing people who we will always be eternally grateful for.”