Content shared via the Lilydale Star, with permission.
When eight year old Lucy McAleer was diagnosed with one of the rarest forms of brain cancer in July last year, the hope of her survival could not have been stronger from family and friends.
But just months after her diagnosis and weeks of treatment and hospital visits, little Lucy lost her battle with diffuse intrinsic pontine glioma (DIPG) on the morning of Saturday 12 March.
In Lucy’s memory and to help children and families in the future who may be told of a DIPG diagnosis, Lucy’s parents Brian and Nicole McAleer have set up a fundraiser for vital research.
“DIPG is so rare and it’s the deadliest, it’s the worst of the worst,” Nicole said.
“Unfortunately, there was nothing more we could do and the hospital could do to treat Lucy so we’re now focused on the future and wanting to help get some breakthroughs in the research happening, even if to begin with that’s just extending the [life] for patients from weeks or months to months to years,” Brian said.
Called Lucy’s Legacy, the Lilydale family launched the fundraiser on social media and within 90 minutes they had reached their 30 day target of $5000.
“We expected that we would get the generous donations but not that fast, that really surprised us,” Brian said.
Within three days, the fundraiser reached a total of $12,700 for the dedicated charity RUN DIPG, an amount they hope only increases.
“Donations go towards the children, the families and the communities dealing with DIPG. So it’s about supporting bigger and better scientific and medical research projects over the long term,” Brian said.
“So I guess it’s just more funding for what they’re already doing and then probably helping them identify new medical trials that they can try because it’s quite limited at the moment in terms of the medical treatment out there.”
Lucy’s parents described her as a bit of a jokester and entrepreneur, with ideas always floating around her head, the last of which was a joke book.
“She was a little writer and I sat down with her and we made this little book of dad jokes, they’re pretty cheesy. We made these little pictures to go with them but there are six or seven jokes in this book,” Brian said.
At Lucy’s funeral, Brian and Nicole set out to keep their daughter’s entrepreneurial skills going by asking for donations in exchange for the book – over $800 was made in just that day.
More copies of the joke book will be made available, with someone already purchasing one in America and profits will be donated to the fundraiser.
Brian and Nicole said although her life was short lived, the impact their beautiful, strong and bright little girl made on people was evident in the close to 400 people present at her funeral and now with people from outside Australia donating to the RUN DIPG cause.
While for the most part Lucy was well and active after her five week intensive treatment period, Nicole said her decline happened rapidly at the beginning of January.
“So she was doing really, really well and about the fifth of January I noticed her speech was, if I wasn’t looking for it I wouldn’t have known, it was very slightly slurred and her balance was slightly off,” she said.
At her next MRI appointment, the doctors indicated that the tumour had grown a miniscule amount but that it was causing these symptoms.
“We were due to go on our Make a Wish holiday the following Sunday and just in that week she went from being able to walk and talk quite well to by the end of the week we needed to organise a wheelchair while we were on holiday,” Nicole said.
From there the decline moved quickly to the point where Lucy could no longer eat, speak, drink or walk.
“She still had a really good spirit but she just went downhill and she was trapped in her body that wasn’t working,” Nicole said.
“The reason why so many people don’t know about it is because it is rare but it’s fatal in practically 100 per cent of cases,” Brian said.
“We never knew about it beforehand and like anyone else, we never thought something like this would happen to one of our children and most people probably feel that way.
“There is research happening out there, but more research, more funding, more awareness needs to happen because on the list of cancers and illnesses that are most common, it’s not up there.”
To donate, find Lucy’s Legacy fundraiser on Facebook .