Monthly Archives: May 2023

A woman is riding a bike indoors, there are other riders in the background.

Autumn Classic riders pedal to victory

On Friday, Melbourne’s cycling community unleashed their competitive streak for the sixth annual Autumn Classic, raising over $162,000!

The stakes were high as riders raced to the finish line in the virtual cycling challenge as they raised much-needed funds for the children, young people and families in our care.

Congratulations to Grupetto, who topped the leaderboard on 105 points, with a strong racing and fundraising effort to take out the win.

Second and third place went to bakpocket (89 points) and Trivelo (66 points), with all teams putting in a sensational effort.

Congratulations also to the Toros for taking out the highest fundraising team award, raising almost $55,000 – an incredible result!

“I think all the riders know if we can put ourselves through just a little bit of pain to raise some much needed funds, than it is all worthwhile… To know the kids are supported and the families are supported when they go through what is obviously the hardest time in anyone’s life.”

Drew Ginn, Olympian and bakpocket team captain

The Autumn Classic is generously supported by many organisations and individuals including The Cycling Fix, Harry the hirer, Zwift, Novofit and our wonderful MC, Pete Mongtomery.

Thank you to all participants, spectators and in-kind supporters who championed this event and helped us raise vital funds for children and families who are navigating childhood life-limiting illness.

We look forward to seeing you back on your bikes next year!

Two young girls are outdoors walking with the help of walkers. They are smiling at the camera.

Two very special sisters

Emily and Olivia can be just like any sisters. Rivals one minute, then best friends the next. They do everything together and share a special bond.

But there’s another kind of connection these two little girls share…

Six-year-old Emily and four-year-old Olivia both live with a life-limiting condition.

It is already beyond belief how a family can cope with one child who has a life-limiting condition. Having two children diagnosed with serious illness is unimaginable. But for Emily and Olivia’s parents, Claire and Andrew, this is their daily reality.

Claire shared, “Our girls need so much assistance with every single thing. They can’t feed themselves. They can’t dress themselves.”

Andrew described, “We were really struggling to cope. Olivia’s oximeter alarm was going off all through the night. She needed constant attention. One day, we were sitting at the kitchen table exhausted, and said to one another, ‘We can’t keep this up anymore between the two kids.’”

That’s when Very Special Kids came into their lives, and things started to become a little easier. It was the circuit breaker this family needed – and it’s all because people like you make our vital care possible.

An absolute essential lifeline to parents like Claire and Andrew is access to hospice respite care with dedicated nursing professionals trained in palliative care.

With their child’s complex medical needs, it’s rarely possible to have help from family or friends. Your support can give free access to overnight respite, plus essential services like physiotherapy, and occupational therapy for very special kids.

It was such peace of mind for us, knowing they had each other and would be well looked after – medically, physically, and emotionally.”

Claire, mum to Emily and Olivia

Not only is respite care a much-needed break for parents, it’s also something children look forward to. As well as being able to take care of complex medical needs, our team are full of energy and love to create a fun environment where children can play games and activities together.

Today, Emily and Olivia continue to need constant, 24-7 complex care. Both girls are non-verbal and they need the help of wheelchairs and walkers to get around.

Andrew said, “It takes us an hour to get out of the house with all the equipment, oxygen, and medications the kids need. It’s hard because if we want to go out to see friends or do something fun, we are so limited. It can be full on.

It’s beyond heart-wrenching for Claire and Andrew to spend each day worrying if their precious children will be able to live a full life doing the things other children can do.

You can help make one thing certain – that Very Special Kids will continue to be here for families like Emily and Olivia’s when they need us. Please give a gift today to help make sure our children’s hospice will always be ready to provide respite and care for every family and child who has a life-limiting condition.

You can make a life-changing donation here.

A group of adults are standing outside a construction site. They are all wearing high vis vests and hard hats as they smile at the camera.

Volunteer tour of Very Special Kids House

We’d like to say a very special thank you to the hospice volunteers who have stood by our side during the rebuild of Very Special Kids House. They provided invaluable support at our temporary space at Monash Children’s Hospital, and will continue to be there when we open the doors to our new home.

In appreciation of this dedication, we hosted a dinner and hospice tour to give our volunteers a sneak peek of the facility they will soon be volunteering at.

After touring the facility, we asked a few of our volunteers to share their thoughts and feelings on the new space.

What did you love about the new hospice during the tour?

“They’ve thought of everything. Each child that walks through the door will have their own favourite space – be it the playground, the pool or the sensory room. I loved the main kitchen and lounge area. There’s so much natural light and space that I know the kids are going to love! The biggest highlight for me was the new pool. I’m so excited to help get the kids in the water and create some fun memories.”

“I loved the thoughtful design, lots of natural light, loads of storage(!) and the expanded outdoor area.”

“I love how the new hospice already feels like such a welcoming space with so many wonderful facilities, such as the hydrotherapy pool.”

What part of volunteering in the new hospice are you looking forward to?

“I can’t wait to see the children enjoying their new spaces, the pool and outside play area.”

“I am looking forward to welcoming families to the new hospice and making memories there. I think the new playground will be a very popular spot!”

“I’m looking forward to recreating our amazing community atmosphere in the hospice. It’s such a special place where the kids are cared for and have heaps of fun. The new, state of the art hospice, is going to provide a much needed and appreciated space for the kids to play, feel safe and have fun.”

What do you enjoy about volunteering at Very Special Kids? 

“Volunteering at Very Special Kids has been a wonderful experience. Through volunteering at the hospice, I have been fortunate to meet some of the most incredible, resilient kids and their families. I have loved hearing their stories.”

“I enjoy feeling part of a community that values everyone. I enjoy my one-on-one time with the kids as well as holding space for them to be happy, have fun and create some memories. I’ve learnt heaps during my time at Very Special Kids and I’m excited to learn more and grow in the new hospice. I believe giving time back to the community is important and what better way to do it, than with the amazing Very Special Kids community.”

“I love simply spending time with the children, allowing them to choose an activity, game or book, and hopefully seeing a smile. I also enjoy seeing Jaffa in the hospice, interacting with the children in her own special way.”

An adult woman and a young boy are standing on steps on a red carpet. They are dressed in Harry Potter costumes and smiling at the camera.

How one volunteer changed a family’s life

Nine-year-old Ryan is sensitive, funny, kind and enthusiastic. In most ways, he is like any other child his age, however, Ryan has had to ‘grow up’ a lot quicker than his peers.

Ryan’s younger sister, Alisha, was born with a rare and debilitating skin condition called Epidermolysis bullosa (EB) disease. Since birth, she has required round-the-clock care from her parents and a team of dedicated health professionals. This has had a significant impact on the trajectory of her brother Ryan’s life. His mum Rumana shares:

“Our life isn’t simple. It hasn’t been since our daughter was born nearly six years ago. Our daughter needs everything we have, and all our energy to help sustain her.”

Ryan’s family moved to Australia ten years ago. All their family and friends are overseas, which means they have limited support and connection to help manage their daughter’s condition.

“All of our energy goes into supporting our daughter and our two children. For nearly six years, we haven’t had the ability to provide Ryan opportunities most kids might have at his age.”

Rumana, Ryan’s mum

Having a sibling with complex needs, has meant Ryan always puts others needs above his own. He tries to avoid causing additional pressure for his parents and takes care of himself as much as he can.

This is why Very Special Kids home volunteer program is so important. It can provide siblings, like Ryan, dedicated time to have fun, explore and connect with a dedicated volunteer.

Speaking about Ryan’s relationship with their home volunteer Janelle, Rumana shares:

“Janelle and our family just clicked together. She is sensitive, like we are, and warm and has lots of energy. She is extremely generous and full of heart. We have trusted her from the day we met her, and that connection has only grown so much more.”

Ryan and Janelle love spending time together. They go to the library, park and movies for day trips, and now twice a year attend the Lord Somers Camp together. Something Ryan’s family wouldn’t be able to attend with him otherwise.

“Our son’s face lights up when she comes to the door. It’s his favourite thing in his whole week. So many people come to the house to help support his sister, but he knows that Janelle is “there for him”.

She has become a friend, and a member of our family.”

“We worry we can’t offer him more, and then we see what Janelle does for him and we can relax, knowing he’s getting the experiences in life that he has needed for so long.”

In his own words Ryan shares, “I can talk to Janelle about superheroes and about lots of things in my family. We go on camp together and I get to play with lots of different kids. She’s very friendly. My favourite thing ever is going to the cinema with Janelle on my birthday to see a Marvel movie.”

“Also, I have lots of board games, but nobody to play them with. When Janelle comes over, we get to play whatever we want.”

If you are a Very Special Kids family who would like to learn more about our home volunteer program, please talk with your family support practitioner or call 1800 888 875.

To learn more about becoming a Very Special Kids volunteer, click here.