Monthly Archives: May 2019

24 Hour Treadmill Challenge raises over $978,000

36 treadmills were kept in continuous motion for 24 hours from 9am Fri 24 May to 9am Sat 25 May raising  $978,000 (and counting) for children in 24 hour care at Very Special Kids Hospice in Melbourne.

Over 1,000 participants including AFL players, politicians, TV personalities and people that have been touched by Very Special Kids, joined forces to keep the treadmills going and raise as much money as possible.

Players from Melbourne Storm, Western Bulldogs, Melbourne FC and Essendon came to show support, many jumping on a treadmill to motivate and entertain participants.

By the end of the 24 Hour Treadmill Challenge participants had covered over 7,178 kilometres, guzzled 634 litres of water and listened to more than 502 songs.

To celebrate the end of the 24 hours we held an award ceremony congratulating the top fundraising efforts. This included the highest fundraising corporate, which went to ALH Group who raised over $166,000 and the highest fundraising team, which went to Seb & Charlie, who raised almost $111,000.

The highest fundraising individual was awarded to Richard and Danielle Burnet, who were running in a team dedicated to their two very special sons Sebastian and Charlie, who are supported by Very Special Kids. Richard and Danielle raised a massive $29,427.

The 24 Hour Treadmill Challenge was made possible through the support of 7 News, 3AW, NOVOFIT, Harry the Hirer and TRUE fitness. We’d also like to thank ALH Group, Bubba Pizza, Rapid Relief Team, Wallop Water, Race Party, Freedom Foods, DJ Lachie, Ezycharge, Coca Cola Amatil, Nature Valley, WISE, Bounce, the nurses from the Very Special Kids Hospice, our wonderful MC’s, the 100 volunteers who donated their time and the incredible participants who made the event so special!

Special thanks to all the corporate groups who participated in the event as well, including Ernst & Young, JBWere, NAB, Guild Group, Toyota Southern Region Office, Toyota Financial Services, Cummins, Icon Group, Jellis Craig Foundation, DFP Recruitment, BSH Home Appliances, LINX Cargo Care, OHM Chartered Accountants, We-ef,  Jemena, Hall & Wilcox, Viva Energy, Bodyfit Training, Decjuba, Video My Job, Genesys, Korn Ferry, Play on Sound & Lighting, Seda & Shadforth Finance Group. We hope to see you all again next year!

There’s still time to donate here: 

We hope to see you all again next year!


Very Special Kids Autumn Classic fund raises $124,902

This morning Very Special Kids held their third Autumn Classic cycling event and raised $124,902!

Through the hard work of our events team, especially Kristi Ingrilli, and loyal supporters, it was an absolute success, as well as a whole lot of fun.

The event is a virtual cycling race with 11 teams onsite participating on their own bikes on an indoor trainer. The riders all competed against each other via software that ‘talked’ to their bike- which even made hills harder to get up!

It was an amazing morning, with a lot of Lycra and competition for a cause. Lowe Finance, took out the win and took home the Autumn Classic perpetual trophy, with riders Mason Austen, James Ogilvie, Lachlan Castran, Aaron Groot, Nick Lowe and Rob Simpson.

Second and third place went to Trivelo and Spiders. Each team went their absolute hardest and it was amazing to see such a serious effort from everyone..

We’d like to thank Harry the Hirer, The Cycling Fix, Bridged & Planet Innovation, SBS, The Coon Toastie Truck & Domain, Peter Montgomery, Veeral Patel and Spin Labs for their amazing support.

It will cost $8.8 million for Very Special Kids to operate this year, and because of this it is important that these events take place. We are so grateful to everyone who supported the Autumn Classic this year!

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Remembrance Day

By Fiona Kyprianou, a mother supported by Very Special Kids.

Remembrance Day for our family is time set aside for the memory of our son Leo.

It is a place where it is okay to let the tears flow freely amongst a warm and loving community who have supported us for the last 3 years. A community that have watched us go from a heartbroken family with empty arms, to holding a new cosy bundle last year, to chasing a busy toddler this year.

We enjoy the procession-like walk across the road to the garden, and take a breath of fresh air after the emotion of the service. The garden is a safe place where we can catch up with other families and our little one can play amidst the beautiful greenery.

So it was apt that this year we were able to create our own garden in memory of our children. The sunflower seeds planted into pots represent the love that we hold for them, and the nurturing of that love that continues, even now. We planted the remaining seeds in our front garden, and watched with awe as the delicate shoots pushed up out of the ground. With a little help from some tall stakes and plenty of snail pellets, the tiny seedlings grew into joyful, strong yellow sunflowers.

These flowers became a tangible reminder of our Leo, and allowed us to spend some quiet time with him as we watered them on those searingly hot summer days. The seeds are now drying so that they may be sown again next year, ready to brighten our garden once again.

Very Special Kids partners with National Palliative Care Week

Next week is National Palliative Care Week and Very Special Kids is proud to partner with Palliative Care Victoria to raise awareness on palliative care and embrace what matters most to people with a life-threatening condition and their families.

Each year, 120,000 Australians need palliative care; and yet so many of us lack the understanding of its true value.

Palliative care, in the most basic sense, is support provided to terminally ill patients and their families. But palliative care isn’t only about death, it’s about improving quality of life. It’s making sure that patients and families have their needs taken care of so that they can focus on what matters most.

Understanding what is to come can put life into perspective. With the proper emotional support, families can more easily accept their circumstances and focus on living each moment to the fullest.

When it comes to paediatric palliative care, when the death of a child is tragically untimely, palliative care gives families the chance to just be families. Very Special Kids understands just how valuable this breathing room is, and strives to give this opportunity whenever possible.

The impact of a life threatening condition is immeasurable and can have dramatic impact on the whole family. Alleviating the burden on the individual and their loved ones is one thing that can help. When care is taken to provide for physical, emotional, cultural and spiritual wellbeing, a difficult time may become a little more manageable.


Super dad returns for his second 24-Hour Treadmill Challenge

The Philbin family from Malvern is one of the families that will benefit from the 24 Hour Treadmill Challenge’s fundraising efforts, and father Tom is also participating in the event himself.

This is the second time Tom Philbin will be taking part, alongside his team of work colleagues from LINX Cargo Care Group, which were more than happy to get behind the cause.

“My amazing colleagues at LINX Cargo Care Group are stepping up to the challenge for our second year. Not only are we running a treadmill for 24 hours at VSK in Malvern but we have numerous treadmills and associated events happening at LINX Cargo Care sites around the country including Brisbane, Newcastle, Sydney, Port Kembla and many more, all with the aim of having a great time and beating our total of last year which was over $30,000” said Tom.

The Philbin family have been receiving support from Very Special Kids for almost six years now, and 13-year-old Luke loves coming to the children’s hospice.

Luke, in many ways, is just like other 13-year-old boys, he’s delightfully charming, and he enjoys playing his iPad, listening to music, being around people and making jokes. Luke does however, require 24-hour care and lives with an illness which threatens his life every day.

Luke was only six-months-old when he experienced his first seizure, and another six months later he was diagnosed with Dravet Syndrome, a genetic intractable epilepsy. Because of this syndrome Luke has regular seizures, experiences intellectual and mobility disabilities, as well as behavioural and sleep issues.

“It’s difficult to quantify the impact Very Special Kids has had on our family. We use the hospice and book Luke in for a couple of days at a time often. Because Luke requires constant care life can be very exhausting and that short break every now and again is absolutely vital to our wellbeing. I sometimes think the perception of other people is that we put Luke in the hospice and then go off and rage for a few days, but nothing could be further from the truth. We generally spend the time catching up on chores and sleep.

“Very Special Kids offers peace of mind when we are not there, should something happen to myself or Sam, we know that they are always willing to jump in and help wherever they can and that helps us sleep at night” said Tom.

The 24 Hour Treadmill Challenge will be taking place from Friday 24 May until 9am on Saturday 25 May 2018.

To sponsor a runner or to make a donation to support families like the Philbin’s, please visit:

Ace’s incredible Mother’s Day gift

While many mothers might be getting breakfast in bed or a bunch of flowers this Mother’s Day, Bianca Bartlett will receive something she thought might never come: a wave hello from her son, Ace.

Ace has Aicardi-Goutieres syndrome. A rare degenerative neurological condition that impacts his ability to control his movement and communicate verbally.

While waving hello might not be a big milestone to most families, the fact that Ace has learned the right time to lift his hand to communicate with his family is truly inspirational.

For Bianca, this gift is more significant than anything she could have expected.

“As parents you just want your child to be happy and be the best they can be” says Bianca. “We’ve missed out on seeing Ace do so many things but to see him waving, means so much to us. It’s the result of years of hard work and never giving up hope. It’s priceless.”

Since Ace was diagnosed in 2012, Very Special Kids has been supporting the entire Bartlett family with hospice and family support services.

“When your child has special needs, it all falls on you. That’s why Very Special Kids is amazing, they are the extended family we can lean on”, says Bianca. “When Ace stays at the hospice it gives us the chance to be better parents for all three of our children and regain our strength to tackle everything that awaits us.”

With Mother’s Day approaching this Sunday, Bianca is looking forward to spending the day with the whole family and is excited to see Ace wave to the rest of the family when he sees them.

“He truly is something special, he inspires everyone around him. To never give up, work hard and to keep smiling. It’s not been easy but I’m so grateful for all that he has taught us”.

A donation today ensures Very Special Kids can be there for the firsts, the lasts and all the moments in between.

Donate now to support children like Ace.

Why our mums are so very special

It’s often surprising what a child will say when asked what makes a mum special. Sometimes it’s the smallest most practical things that make a difference at other times it’s a beautiful hug or gentle touch.

In any case we know that mums all around the world are special and our Very Special Kids mums are extra, extra special.

Take a look at what some of our Very Special Kids children said about mums when they spent the day honing their circus skills at our circus themed Sibling Days on the 9th and 11th April.


Mothers are special to us because they:

 “Take care of us”, Zoe.

“Play Lego and cooking cool stuff”, Tate.

 “Do a lot of things for you and keep you safe”, Eliza.

“Buy us toys”, Lance.

“Help us with everything!”, Ella.

“They look beautiful and are caring and are the best mum ever.”

“They love me, help me, buy food.”

“Care for us and help us and they buy clothes for us and love us.”

“Are kind and care for us.”

“Cooks and cleans for me”, Grace.

“Help you”, Owen.

“Do everything”, Dominic.

“Make the best brownies ever”,  Phoebe.

“Caring for us and keeping us safe. Thank you.”

“I love you Mum because… I love you Mum”, Axel.

To all the mums out there, and especially the mums of our very special children, we wish you a wonderful Mother’s day.

Ace achieves the impossible

Ace is seven years old and he has done the impossible.

Ace has Aicardi-Goutieres syndrome a rare degenerative neurological condition which calcifies parts of his brain. This impacts his ability to control his movement and communicate verbally. But with the support of his family and with years of hard work, Ace has reached a very special milestone.

Ace Bartlett has just learned how to wave hello.

This might seem like an insignificant milestone to some, but for those that know and love Ace like we do, we know this is an incredible achievement.

For Ace to not only physically lift his hand to wave but also to have learned the right time to express the movement, is truly inspirational. It’s taken him 7 years to say “hello” to the people that he loves.

Nothing comes easy for Ace. He has to work harder at everything to achieve the things most of us take for granted. This has not been an easy journey for Ace, but you wouldn’t know it when you see his beaming smile and hear his cheeky giggle.

Ace is committed to working hard to make each moment matter.

The team at Very Special Kids is committed to helping the children and families in our care make the most of the moments they have left.

Ace’s condition has been diagnosed as terminal, but a lot about his condition is unknown.  There’s no way for Ace and his family to plan for the future, so they don’t. Instead they focus on living each day one moment at a time.

Community donations help fund crucial family support services, occupational therapies and respite for Ace and his family to survive their way through this unknown journey.

As Ace’s other younger siblings Atticus and Indigo, grow up and start to understand their own challenges of having a sibling with a life-threatening condition, Very Special Kids will also be there to ensure they have the support to find their way through.

A donation today ensures Very Special Kids can be there for the firsts, the lasts and all the moments in between.

After hearing Ace’s story, I tried to remember the first time my two girls waved at me for the first time. I realised, although I know they waved at me those moments were overshadowed by their first words, the first steps and all the other milestones we shared together as we watched them grow.

For the families in our care many of those milestones will never come. Their lives don’t follow a set timeline of milestones they can tick off as they grow up, instead their futures are unknown, and every day is a gift. That’s why for these families our support is not a luxury is a necessity to ensure they survive all the unknowns that life will give the.

Your support ensures that no child with a life- threatening illness is alone in the moments they need support the most.

All our support services are provided free-of-charge to the families we care for and are tailored to their unique needs. We don’t know when a family will need our services, but with your generosity today we can ensure we will be there when there’s no one else.

With your donation, we can be the constant amongst all the unknown.

Donate now