Monthly Archives: September 2016

Aiding the transition from child to adult support services

When Jack Evans was born his family were told he wouldn’t live past two years old. Jack is now 17-years-old but as his 18th birthday approaches his family are facing new challenges.

Spinal Muscular Atrophy is a genetic disease that meant Jack was very sick as an infant and still requires care 24 hours a day to meet his needs. Jack is in a wheelchair for posture and mobility, is tube-fed, and needs assistance with breathing.

Jack had his first stay at Very Special Kids Hospice when he was two-years-old and since then has stayed at the hospice more than 50 times. This allows the Evans family to do things they normally couldn’t do, including getting a full night’s sleep.

“By taking care of Jack for us, Very Special Kids have taken care of us as a family” says mother Lisa Evans.

“The service has allowed us to nurture ourselves and provide some normality for my other children, and for Jack, going to Very Special Kids is his home away from home. He feels very safe there – it’s a sanctuary for him.”

But when Jack turns 18 next May he will no longer be eligible for support through Very Special Kids and Lisa says she finds herself dreading his 18th birthday.

Very Special Kids helps support families through the transition from child to adult support services but many families like the Evans find this transition quite tough.

“Very Special Kids have been the difference between surviving the journey and remaining intact as a family. I am anxious about how my life will look and feel after Jack turns 18.”

Thankfully there are organisations out there that are looking to find housing solutions for younger adults with a disability. The Summer Foundation is one of them.

Established in 2006, the key aim of the Summer Foundation is to change human service policy and practice related to young people in nursing homes.

“This is really promising” says Lisa, “I want options for Jack after 18 that not only meet his physical needs, but are age appropriate and add value to his quality of life as well as mine. Long term I would like to dream that there is a place that Jack could call his home outside ours.”

Help support children like Jack and his family:

Very Special Kids are proud to join The Summer Foundation and Isabella and Marcus Paediatric Brainstem Tumour Fund as an event beneficiary for the Upstream 50km Challenge.

The Upstream Challenge is a 50km or 20km walk along the Yarra river trail on Saturday 5 November. When you register you can choose to donate funds to one of the three beneficiaries, or all.

Register now!

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!

A girls weekend to remember

Mates Weekends are a great chance for very special teens to create meaningful friendships, hang out, and feel like regular kids with normal lives. Recently five very special teens were given the ultimate star treatment at our Very Special Kids girls weekend.

The weekend kicked off with Friday night karaoke fun at the hospice. The girls enjoyed singing, dancing and making their own music video clips to their favourite songs.

On Saturday the girls glammed up and were treated to makeovers before heading into the city to ride on The Melbourne Star which proved to be the highlight of the weekend. Thanks to Grill’d Malvern for the delicious burgers!

15-year-old Jasmine said “the best thing about the weekend was getting to hang out with all the girls as we only see each once or twice a year, and doing really fun things we wouldn’t normally do.”

The girls who attended, despite having physical challenges still have very high cognitive ability. They are able to relate, and share their feelings with one another, without the fear of judgement or misunderstanding. It’s the perfect setting to forget their worries and just enjoy a fun-filled weekend.

Help us support Mates Weekends:

Very Special Kids are proud to be one of three chosen beneficiaries involved in the Upstream Challenge – a 50km or 20k walk along the Yarra river trail on Saturday 5 November.

When you join our Very Special Kids team, all money raised goes towards funding our Mates Weekends program supporting children with life threatening conditions.

Register now!