Finding cures for children's genetic diseases

Fred's Story

fred.pngFreddy was only 7 months old when diagnosed with cancer. Fred’s mum, Kate, noticed 'a bump' on her son’s upper thigh right after he was born, and they were sent to Adelaide for diagnosis.

She was told it was a rare but benign fibromatosis, not thought to be progressive. But when it started to change 6 months later, Kate had to advocate hard for further action back in Alice Springs.
“Nobody wants to believe a child has cancer, not GP's and not even pediatricians," Kate says.

“It was a long journey to try to work out what it was, and even now nobody is exactly sure, because it has presented so atypically. We are off protocol and on a specialized treatment plan, as frightening as that is, it does mean some of the best oncology specialists in Australia and the US have been considering how to give Fred the best chance."

The family is based in Alice Springs, but to get the kind of care Fred needed, Fred and his mum had to take up residence near the Children’s Hospital at Westmead. Kate's husband, Brad, and 5-year-old son, Jim, were on their own back in Alice Springs.
“My husband is running two businesses , has presided over the Alice Springs Show, and is a trustee of the government park back home, as well as looking after 3 chooks, 2 ducks and our 17 year old dog. Jim was in preschool when we left and has started school this year. Doing the right thing by Jim has been terribly important for Brad, it's been a huge strain."

Fred started 6 months of chemotherapy at just 7 months old, and he will be on a total of 8 x 21 day cycles for over a year. It's been a total of 5 different chemotherapy drugs, with the tumour surgically resected after 4 rounds. Surgery wasn’t able to remove it all, as microscopic threads extending into fatty tissue down the leg were discovered after resection in pathology. Thus, Fred was slated for another 6 months of more aggressive chemotherapy, to be followed by a half year of lower level chemotherapy.
fred2.pngResearch, high levels of nutrition, careful food selection, home cooking and acupuncture have supported Fred's immune system throughout this time so he can maintain wellness. But Kate said it's been a tough time for all of them.
“He’s running around now and acting like a toddler, and as frustrating as the terrible two’s are, it makes me happy. I didn’t like seeing him sick. There were so many procedures and so many toxic chemicals to fight the cancer. It’s unimaginably awful to see your son poisoned like that, but it’s the only way anyone had to help him.”
When Kate and Fred first visited CMRI’s new Centre for Kinomics, Kate was excited. The Centre, which opened on 23 September 2012, is designed to help develop better anti-cancer therapeutics with fewer side effects.

Kate said, “We’d been looking at the brochures for hospital research and it was all about characterising the pathology. CMRI’s research is about finding better treatments, and we are so excited to know this kind of thing is going on. It might help in the future and it is something tangible to pin your hopes on in a scenario where there are very few guarantees indeed.”

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