Finding cures for children's genetic diseases

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21/Nov/2018  

The word Rosalie Adoncello uses to describe herself is “naïve’’.

Like so many devoted and optimistic young parents, she thought her children were untouchable and an aggressive cancer like neuroblastoma was unimaginable.
 
“I knew nothing about cancer. I didn’t even know little kids got cancer, I was that naïve.’’




This year on Giving Tuesday, a global movement to encourage philanthropy, Rosalie is encouraging everyone to donate money to cancer research at Children’s Medical Research Institute. On 27th November, you are encouraged to stop and think about how you want to “give’’ this Christmas. Instead of spending thousands of dollars on presents, Rosalie is urging you to give to charity.

​“We really need research. It’s hugely important.’’

Rosalie may call herself naïve, but when her two-year-old son, Jullian, started developing endless ear infections, colds and other viruses – her instinct said something wasn’t right. When she noticed the glands on his neck were swollen, she knew there was more going on.

“We took him for an ultrasound to look at his glands and the GP didn’t like what she saw,’’ Rosalie said.

“She said we should see a paediatric surgeon, and as soon as she said that, my heart sank. She said it was urgent, and I felt ill. But I just thought we were talking about surgery.’’

For Rosalie, surgery was a scary proposition, but she assumed one minor operation would fix everything.

“Five days later, we were at the hospital and as soon as the surgeon saw Jullian he asked to take his clothes off to look at his tummy. I had no idea what was going on, we were supposed to be talking about his glands.

“He told us straight away there was a tumour the size of an orange sitting on his adrenal gland. There was no sugar coating. He told us, ‘he has cancer, we just don’t know what kind’.’’

Jullian was tested and the results revealed he had neuroblastoma stage four. 50 per cent of children with this diagnosis die.

“It had spread into his nervous system and into his spine.’’

He started eight rounds of chemotherapy to reduce the size of the tumour, before surgery. Tumours on his adrenal gland and kidney were removed, plus others that were found in his abdomen. He had lumbar punctures, a bone marrow transplant, radiotherapy, and by Christmas was in isolation.
 
“We got out of hospital on Christmas Eve, but we had to stay in isolation. It was very strange. I couldn’t see my daughter, who was five. Jullian was grey, it was horrible.’’

Jullian’s treatment continued for the next year and a half. Rosalie can recall every test, treatment and procedure as though it was yesterday. She still cannot comprehend how much such a small child could withstand.

The family is now celebrating 10 years in remission. Jullian is a fighting fit 13-year-old boy, but that incredibly long and arduous treatment has taken its toll.

Many people assume that when a child goes into remission they are healthy again, but that is not the case. The “one-size-fits-all’’ nature of treatment has a lasting impact.

“We just had the beautiful milestone of 10 years in remission. He’s doing well, but there were side effects. He’s already had braces, because the treatment impacts on his teeth. He has hearing loss in both his ears, but unlike most kids who’ve had this treatment, he doesn’t have to wear a hearing aid. He has pain in his joints, like arthritis. There is a great impact, especially as the kids get older.’’

When Rosalie hears about Children’s Medical Research Institute’s ProCan project and its work on studying neuroblastoma, with a focus on speeding up the diagnosis and reducing the time needed to identify the optimum treatment – she is relieved for other families. ProCan is also working on discovering new treatment options, by finding the weak points in neuroblastoma and attacking them in a new way.

“If we can find a cure, or even just help to find new treatments, that would be great. At the moment the whole process is too long. For us it was almost two years. It’s too much for the children and the families to go through. ‘’

Rosalie and her husband Riccardo have three children - Alyssa 18, Jullian now 13, and Mikayla 8. They know they can’t protect them from everything that life throws at them, but they want to know that their children – and future generations – will be given the best opportunity.
“Every day I look at Jullian it’s on my mind. When he was born, we took a photo and his fists were clenched so tight and I just look at that and think, he was a born fighter. I call him my champion, he fought this. The more we can help all kids, the better it will be for everyone.’’
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