Dialog Box

Children's Tumour Foundation

Charlie's Story

He loves his animals which include his two dogs, Dexter and Milo, a fish called Greg and a kitten called Lyla. Charlie is the Waterboy for the Warrack Eagles Under 14s football team in Warracknabeal.

After enduring 12 months of chemotherapy, Charlie is enjoying life without an infuser port and was most proud when he was able to jump from the Walking Bridge into the creek with his friends and feel like a normal kid!  

Like many, NF makes Charlie scared and anxious. In fact, when his mum Jules speaks to him about NF, he doesn’t have questions and doesn’t want to know detailed information. He knows he has NF and he feels different to most kids his age, because he has struggled with reading and writing. But he is a happy and fun kid who has an entire community supporting him!  

Charlie’s family have been raising awareness and funds for NF since 2012, when Charlie was diagnosed with Neurofibromatosis Type 1 (NF1). Like many families who have children with NF from a spontaneous mutation, they had never heard of NF1 until Charlie’s diagnosis. They were shocked to discover that it is more common than Cystic Fibrosis, Muscular Dystrophy and Huntington’s Disease.  

Every case of NF1 is different, which makes it all that much harder to deal with as you just don’t know what to expect."

Charlie was diagnosed when his teacher mentioned that he was struggling with his learning at school. The Principal at the time suggested that we get Charlie medically checked out just to be on the safe side. 

"We went to a Locum Paediatrician in Horsham and he diagnosed Charlie straight away with NF1 based on his physical appearance. The diagnostic criteria included multiple Café-au-lait spots on his body and axillary freckling under the armpits."  

It has been a roller coaster of specialists appointments in Melbourne, Ballarat and Mildura, many hours at the Royal Children’s Hospital and numerous tests and surgeries.  

Charlie was diagnosed with an optic glioma, a form of brain tumour, and underwent 12 months of chemotherapy and brain surgery. Charlie has fought through chemo, surgeries, MRI’s, blood tests, X-Rays, blood transfusions, ultrasounds and numerous specialist appointments.  

The emotional side of having a condition that requires constant attention has been the most difficult for Charlie and his family.

Charlie still has his brain tumour and it has been stable since finishing chemo in May 2014. But recently, Charlie had an MRI on his brain and spine and his tumour had shrunk a tiny bit! It was such a surreal moment for his family to hear such good news. His mum says, “NF1 will never go away. Charlie has it for life. We as a family just learn to deal with it and continue to spread awareness about the disease whilst raising funds at the same time.”

By people raising funds the Children’s Tumour Foundation we were able to employ a Support Worker based in the Royal Children’s Hospital who has been so helpful to us throughout our journey. Before the Support Worker was employed, we were a bit lost on how to deal with NF1."

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