Gold Coast mum Jenny Donohoe fighting to increase funding for brain cancer research after losing 12-year-old son Sam
Jenny Donohoe’s son Sam was full of life, full of joy, and most of all, full of love. But she lost him at just 12 years of age to a disease that kills more Australian children than any other. Now this Gold Coast mum is fighting for change.
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Santa Barbara woman Jenny Donohoe lost her 12-year-old son Sam to brain cancer 14 months ago.
She is now doing what she can to honour her loving boy, although she says she is “lost in grief”.
Below, in her own words, is her story – and that of her beautiful son Sam.
In August, 2015, my son Sam was nine years old when I noticed a trembling in his hands. He was in his class musical that day and, by the end of it, I was so disturbed by him tapping his hands together I took him straight to the doctor.
There were other signs. He’d been to an ophthalmologist and completely missed a line on a chart, but when you’re told your son has a brain tumour that’s inoperable and radio and chemotherapy are of no use, I can only describe it as terror. Two and a half years of terror.
He endured so much in that time but he never wanted his brain tumour defining him.
I am still deeply traumatised but feel like I need to honour him. He put all his energy into love right until the end. His joy was so palpable; he was just thrilled we could spend each minute of every day together. That’s how he dealt with it. It was who he was.
But I’m lost in grief. They say time makes it better but it’s got worse for me. I think the grief of losing a child is its own grief. Some days I feel like I’m just struggling to survive.
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I don’t think our society really understands how to deal with that. People have accepted Sam not being there any more and they’ve moved on, but I haven’t. I feel wretched in my isolation.
When I go to school, it’s like the parting of the Red Sea. People say to me don’t forget you have your daughter (Sam’s younger sister India, 8) but I feel like I’ve been pushed into another universe where I can’t expect anyone to follow me and never can I ever go back.
Sam’s school has been wanting to hold a memorial for him but I wasn’t able to do it because, for me, it felt like he was still with me.
It’s being organised for May and it won’t be called a memorial but a Sam Spectacular and it will be for everyone. It’ll be about who he was and it’ll have all the things that were special to him: there’ll be an eagle — he loved eagles; mountains — we were going to climb The Annapurna together in Nepal; his communing with nature.
It will be about the remarkable person he was and what a loss he is to the world. I don’t want it to be about brain cancer because that’s not what Sam would want to be remembered by.
But I’ve set up a petition through change.org to try to increase funding for brain cancer even though, honestly, I feel like whatever I can do would just be a drop in the bucket for what’s required.
The government — and the pharmaceutical industry — has got blood on its hands when it comes to properly funding brain cancer research. Brain cancer is the biggest killer of children of any disease in Australia — not many people know that — and survival rates are very low, yet the funding continues to go to breast cancer and leukaemia that have much higher cure rates.
If the government knows a busload of children is going to die every year from brain cancer and there’s been no advance in treatments for the past 30-plus years, they’ve got to be held accountable.
The terrible thing is the incidence of brain cancer is getting higher.
Just this month, a group of 250 scientists presented a petition to the United Nations and World Health Organisation warning about the number of devices that deliver radiofrequency straight into the brain and the unknown effects of that.
It’s all around us these days and it’s particularly concerning for children and their developing brains.
No one knows how Sam got his brain cancer. He passed away in January last year. He got to have his 12th birthday and Christmas.
It saddened him to see a world where people were self-obsessed and on their screens when life was meant to live.
He knew what truly mattered and I want to share Sam’s story, not sugar-coated, and I want thousands and thousands of people to sing the petition. I feel like Sam and I can be a team again if I can do that for him.
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