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21
Sep 2016

Completing challenges for a cause

Jaxon Cooper was a very outgoing boy. He was so full of life that sitting still was nearly impossible; he was always on a mission.

In 2014, when Jaxon was just 10 years old, he was diagnosed with a diffuse intrinsic pontine glioma (DIPG), which is a tumour located in the middle of the brain stem. Overtime the cancer affected his ability to use his arms and legs, and he needed a splint to walk.

Parents Jodie and Rob became involved with Very Special Kids not long after and found the support of their Family Support Practitioner particularly helpful.

“When we first met Marianne in Ballarat, she introduced us to another family who their child passed away from DIPG” says Jodie, “It was nice to be around other parents who went through similar things.”

The Coopers also became involved with the Isabella and Marcus Fund, a charity which aims to raise funds for Australian research into paediatric brainstem tumours with a focus on DIPG.

Jaxon had a bucket list and many people helped him knock things off from the organisation. “One of his goals on his bucket list was to find a way to cure DIPG and stop other kids dying” said Jodie. Jaxon also had the opportunity to meet one of his favourite basketball players, Andrew Bogut.

As Jaxon’s tumour progressed, he became unable to use his whole body at all. Inside he was the same, his thoughts were still all there, but he could no longer walk or talk.

When the most difficult time came, Jodie said it was the best decision to take Jaxon to Very Special Kids Hospice for end of life care.

This allowed Jodie, Rob and their other 3 children to stay on-site at Very Special Kids family accommodation where they could be close to Jaxon but still get the much needed rest they needed.

“For me, it was a chance to step back and just be myself and be a mum. Everything was looked after for us, which was the best thing that could happen. I was so exhausted so it was nice to take a step back and help the other kids through this tough time as well” says Jodie.

Three weeks later, on the 11th of December 2015 at Very Special Kids hospice Jaxon’s mission came to an end.

“It was a real hard time but having the staff around really helped. They were so kind and caring. The hospice allowed us to have lots of visitors and it was a chance for our family to come into an environment which wasn’t as dark and depressing as it could’ve been.”

The Coopers are still supported by Very Special Kids and the Isabella and Marcus Fund and will be participating in an upcoming trail walk to raise funds for both charities. The Upstream Challenge, is a 50km or 20km walk along the Yarra river trail.

“These events are super important and encourage a broad range of people to get involved. It’s a good way for the community to find out about these charities, they may not know about them otherwise. When we found out Jaxon’s cancer was terminal we were told most people don’t know about this stuff until they’re facing it” says Jodie.

“The walk will be a huge challenge but if Jaxon could push through and face challenges with his condition, this is something we can do to help show our support and raise funds for others with his condition.” Says Jodie.

When you register to participate in the Upstream Challenge you can choose to donate funds to one of three beneficiaries, or all.

Register now!


Categories: Family News, Fundraising News, Hospice News, Very Special Kids News
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