Monthly Archives: May 2015

Footy fever at Mates Weekend

It was footy madness for the boys that attended the Very Special Kids Mates Weekend in May.

The weekend kicked off with a visit from musical legend Greg Champion who entertained the boys with footy songs while they prepared signs for the match they were going to that evening.

Then it was off to the MCG for dinner and to watch the Melbourne vs Sydney game, with Sydney taking the win.

The adventure came to a close the next day with a family BBQ to celebrate Mother’s Day.

The Very Special Kids Mates Weekend for boys was made possible by the generous support of our volunteers, Cooper and Milla’s, Crown Coaches, Melbourne Football Club and Art Cabriolet.

Mates Weekends are designed to bring together children who have high cognitive ability and are facing similar physical challenges. Very Special Kids also runs Mates on the Move Weekends for children that are very mobile and have developmental and intellectual disabilities.

Thanks for helping Imyjen

More than $600,000 was raised through the 24 Hour Treadmill Challenge from 22 to 23 May. Thank you to all the incredible participants who helped to raise funds for children like Imyjen who stay at Very Special Kids Hospice.

14 year old Imyjen Steele loves listening to music, riding the bus, and hanging out with her sister Auraria.

At three months old Imyjen was diagnosed with Swartz Jampel Syndrome, a condition preventing her from walking, talking or moving her muscles, and requiring her to use a wheelchair.

Caring for Imyjen is all consuming for single mum Christine Stow, who says she was confused about where to get help before finding Very Special Kids.

“Very Special Kids has been like a hand out of the darkness,” she said.

Christine said she was impressed that Very Special Kids Hospice had the equipment to cater for Imyjen’s needs.

“Getting care from other places was always a big hassle, but Very Special Kids is understanding and easy. I often found myself holding my breath with previous services, but when Imyjen’s at the hospice, I can relax,” she said.

24 hour challenge raises $600k for kids in 24 hour care

32 treadmills were kept in continuous motion for 24 hours from 22 to 23 May raising $629,000 for children in 24 hour care at Very Special Kids Hospice.

1,118 participants including celebrities, AFL players, politicians, and people that have been touched by Very Special Kids, joined forces to keep the treadmills going and raise as much money as possible.

House Rules Victorian contestants Bronik and Corrine, footy players Leigh Montagna and Grant Birchall, Stonnington Mayor Melina Sehr and State Member for Malvern Michael O’Brien, all jumped on a treadmill to motivate and entertain participants.

By the end of the 24 Hour Treadmill Challenge participants had covered 5,771 kilometers, guzzled 576 litres of water, listened to more than 500 songs, and far exceeded the event’s goal to raise $500,000 through donations from friends and family.

The funds raised will go to Very Special Kids Hospice, Victoria’s only children’s hospice, providing specialist care for children with life-threatening conditions.

Very Special Kids CEO Sarah Hosking says she’s astounded by the support from the community.

“The funds raised ensure we can continue to care for children with life-threatening conditions and their families. We’re extremely grateful for everything everyone has achieved,” she said.

Very Special Kids supports 900 Victorian families that are caring for children with life-threatening conditions. Its services can be accessed from a child’s diagnosis through bereavement, and include respite and end-of-life care at its children’s hospice and counselling for families.

The 24 Hour Treadmill Challenge was made possible through the support of The Fitness Generation, True and Seven News.

Star struck at treadmill challenge

A host of media personalities and AFL footballers will take part in Friday’s 24 Hour Treadmill Challenge, which aims to raise more than $500,000 for children in 24 hour care at Very Special Kids Hospice.

As a media partner of the event, Channel Seven personalities will be taking on the challenge. The Victorian contestants from the current series of House Rules, Bronik and Corrine, will kick things off at 9.00am on Friday morning. AFL Game Day panelist and St Kilda footballer Leigh Montagna appears at 4.00pm on Friday, while Seven’s AFL presenter Sam Lane will help bring the event to a close from at 8.00 to 9.00am on Saturday morning.

Former Hey Hey It’s Saturday and Dancing With The Stars host Daryl Somers will hit the treadmill at 10.00am on Friday morning, just after City of Stonnington Mayor Cr Melina Sehr and State Member for Malvern Michael O’Brien MP.

AFL footballers take over on Friday afternoon, with Western Bulldogs players, Lynden Dunn (Melbourne) at 3pm, Grant Birchall (Hawthorn) at 6pm and Alex Johnson (Sydney Swans) at 9.30pm.

Meet Sue Kearney Hospice Manager

Very Special Kids Hospice is one of a kind in Victoria, offering eight beds for respite and end-of-life care for children with life-threatening conditions, with nurses available 24 hours, and family accommodation on site.  At the helm of this operation is Hospice Manager Sue Kearney.

Sue leads a team of 20 nurses, 15 carers, four doctors, the hospice music therapist and hospice cook, with the support of Very Special Kids’ Chief Medical Officer Simon Cohen.

A registered nurse with close to twenty years’ experience in paediatrics, Sue tirelessly works to enable her team to offer the best care possible to children staying at the hospice.

Sue, a mother herself, says access to the hospice is essential for families who need a much-needed break.

“When I leave the hospice every day, I feel lucky to go home to two healthy children and unwind.  I can go to the beach.  Go out for dinner or a movie.  I can call on a friend to babysit and take some time out for myself and my husband.  Sadly, this isn’t possible for many of the families we support,” she said.

The Very Special Kids Hospice team work hard to make the experience for children staying there a home away from home, with comfortable surroundings and fun activities.

“The hospice is filled with warmth and love, laughter and tears, delicious smells from the kitchen and those familiar sounds of home like a TV blaring a cartoon, a teenager playing a musical instrument or a story being read to a child,” said Sue.

Sue said that even though at times the work can be tough, she loves her job because of the families.

“Whether it’s hard times or good times, I get to spend precious moments with families and help them get the respite they need.”

Very Special Kids supports 900 Victorian families who are caring for a child with a life-threatening condition by providing access to Very Special Kids Hospice and professional counselling services.

Fundraising for the Watson brothers

Seven-year-old William Watson and five-year-old Hamish Waston have an extremely rare genetic condition. The brothers are two of only six cases in Australia and 60 reported cases worldwide.

The condition, Adenylosuccinate Lyase (AdsL) Deficiency, has caused severe progressive neurological damage to both boys. They require wheelchairs for mobility and suffer from daily uncontrolled seizure episodes.

Mum Natalie said the boys need constant care.

“Brian and I are their arms, legs and voice. We help them with every aspect of daily living, from dressing to feeding, monitoring for seizures and turning them over through the night to make them more comfortable,” she said.

The family have turned to Very Special Kids for respite care at the hospice and emotional assistance through their Family Support Worker.

Natalie said she trusts the high quality care provided at Very Special Kids Hospice.

“I can relax because I know that they are okay. I know that the nursing staff will make the right decision for the best care of the boys and we are only a phone call away.

“The hospice has a fantastic communal area where all the kids come together, so it’s comforting to know that William and Hamish will be included in all the daily activities, as well as have times for quiet and rest.

“It feels like it’s their home away from home,” she said.

From 22 to 23 May more than 1,000 participants will run the 24 Hour Treadmill Challenge to raise funds for children in 24 hour care at Very Special Kids Hospice. To sponsor a runner visit


Palliative care is not just for the elderly

Very Special Kids Chief Medical Officer Dr Simon Cohen shares his thoughts on the need for more resources for paediatric palliative care. This opinion piece originally appeared in the Medical Observer.

In the developed world, death in childhood is relatively uncommon, and when it happens, or a limited prognosis is given, it seems more of a failure of modern medicine.

Despite its rarity, there is a significant number of children with life-threatening conditions, and this is increasing.

A recent paper from the UK estimated a prevalence of children living with a life-threatening condition at 32 per 10,000 population — double the previously reported estimate.

With a population of 4.37 million children in Australia, there could be as many as 14,000 children with a life-threatening condition.

Although challenging, we need to start talking more about paediatric palliative care and the options available to children and the families that care for them. Palliative care is not just for the elderly.

The spectrum of life-threatening conditions in childhood is different to adults and more varied. In the paediatric group, less than half have a malignancy.

The remaining children have a range of often rare conditions, mostly genetic or congenital diseases and neuromuscular conditions.

Many of these conditions have prognostic uncertainty and thus palliative care services may be required to support the patient and family for many years.

The road to be travelled requires many aspects of palliative care along the way, in order to mitigate the suffering of the patient and family.

For family carers, there is a particular need for psychosocial support and respite care. A study of families supported by Very Special Kids found that 47% of family carers exhibited clinically significant concerns with psychological wellbeing, including stress, anxiety and depression.

Parents are stretched beyond their limits as they work to meet the needs of their sick child and those of their well children; their own mental and physical well-being takes a backseat.

Hospices were originally established in response to the issue that death had become more of a medical event, occurring in a hospital, which is the case for most children in Australia. In contrast, a death well managed at home can create the best result in terms of bereavement and how the family feel the death was managed.

Where a death at home is not possible, a hospice provides the required medical support in a more comfortable environment.

Importantly, parents need availability of options to allow them to select the best one for their circumstances, yet in Australia there are only two hospices dedicated to the care of children with life-threatening conditions.

Beyond end-of-life care, a hospice can also provide much-needed respite care and the psychosocial support needed during the child’s lifetime and beyond.

The Very Special Kids model of care includes access to the hospice for planned and emergency respite care and a range of support services including counselling, group therapy, and assistance with accessing other government and community services and liaising with medical providers.

At Very Special Kids we support 555 children in Victoria with a life-threatening condition, and 366 bereaved families, but we estimate there could be as many as 4000 more children in the region that need our services. The same would be true for similar services in other states.

With all this in mind, how do we address this pressing need?

Health providers at all levels have a role to play. At the front line it is up to providers of primary care to be aware of the unique journey families face and the services available.

Families may need to be encouraged to seek help. Parents can be reluctant to accept palliative care support as it can be seen as ‘giving up hope’, but these services offer more than just end-of-life care.

On top of that, resources are needed to allow such services to grow. To create the support for these resources, we must have the conversation at all levels about appropriate paediatric palliative care options.

Q&A with Family Support Worker Mei Goh

In the lead up to the 24 Hour Treadmill Challenge from 22 to 23 May we interviewed Family Support Worker, Mei Goh about her work with Very Special Kids families and why the challenge is so important

Q: What do you do in your role at Very Special Kids?
A: I work directly with the children, parents and siblings. I have a multi-faceted role. Depending on the family’s needs, I provide a range of support services including formal and informal counselling to bereaved and non-bereaved families. Sometimes we do case managing and advocacy for some of our families who don’t have a Case Manager to support them. I also facilitate various group programs throughout the year for families and train new volunteers.

Q: What difference does the Hospice make to the lives of the families you support?
A: A mother said “Mei, I do not know what I would do without Very Special Kids for respite. My boys have nowhere else they can go” and this stayed with me since. It is heartbreaking to know there are no other options, but I am extremely grateful Very Special Kids Hospice is available for Victorian families who need it. Another family came in for end of life care and we had the whole extended family move into the parent accommodation which gave the family time together at the end of their child’s life. Without the space and the specialty of the hospice service and staff, this family would have nowhere else to turn to.

Q: What inspires you to work at Very Special Kids?
A: I grew up overseas and went through childhood cancer myself which has made me realise that Very Special kids is such a unique organisation. My family did not have support when we were going through difficult times. It is a great honour to be able to walk alongside these families through such hard times. The families I work with are my source of inspiration.

Q: Why should people fundraise to support the Hospice?
A: The children and their families really need the respite. For a $1,000 a night, parents can get a good night sleep and siblings are able to spend quality time with their parents while the child receives respite with Very Special Kids.

Q: Do you have anything you’d like to say to the participants in the 24 Hour Treadmill Challenge?
A: Keep doing the amazing job you’re doing and keep believing that you are making a difference to the lives of the families. Every little contribution helps in a big way. The smiles we witness from the families are worth all your hard work, training and every penny raised.

From 22 to 23 May more than 1,000 participants ran in the 24 Hour Treadmill Challenge to raise funds for children in 24 hour care at Very Special Kids Hospice. To sponsor a runner visit


Or make a general donation to the Very Special Kids Hospice Appeal.


Celebrating bright, new accommodation for families

Very Special Kids celebrated the opening of its renovated family accommodation, and the success of the Chain Reaction Challenge Victorian riders, at a special event in one of the new family apartments.

The event was attended by riders from the Victorian chapter of the corporate cycling event Chain Reaction Challenge, who have collectively raised more than $2 million for the event’s charity partners over the past two years.

$563,000 of that has funded the Very Special Kids family accommodation renovation and the future creation of a Very Special Kids Garden of Remembrance.

Very Special Kids CEO Dr Sarah Hosking said the organisation is grateful to be supported by such passionate fundraisers.

“The Chain Reaction Challenge riders have worked tirelessly to not only complete a challenging ride, but also raise millions for charities like ours.

“Without their fundraising our family accommodation renovation would not have been possible,” she said.

The family accommodation has been transformed from three to seven bedrooms, across two separate apartments, and fitted-out with all new furniture and bright, contemporary home wares.

The increase in capacity will enable more families to be close to their child during a stay at the hospice or to access medical appointments in greater Melbourne.

Chain Reaction Challenge Foundation CEO John Ward said the organisation is a proud to have been able to fund the renovation.

“We hope that the through our efforts that a family’s stay at Very Special Kids is now more comfortable,” he said.

The renovation and fit-out of the family accommodation was also made possible by a number of generous suppliers who donated goods and services including Rothe Lowman, Montlaur Project Services, Slattery Australia, Tract Consultants, McKenzie Group and Cobolt Construction.

Providing a much-needed break for the Mullans

When Belinda and Craig Mullans’ first child was born, they had a picture in their mind about what life would be like with their baby boy. However, it didn’t turn out as planned.

“My first Mother’s Day was not at all like I expected it would be. Jack was only three weeks old and he was still in intensive care. We were unsure about whether he was going to make it,” Belinda said.

“He had a brain hemorrhage while in-utero and his brain fluid was not circulating the way it should have been, which meant his head circumference was getting bigger and bigger. He needed surgery to have a shunt placed in his brain to improve the flow of fluid.”

Now nine years old, Jack has cerebral palsy, epilepsy and requires a wheelchair for mobility. He also has a visual impairment that causes him difficulties in being able to see people and associate places.

While the family are thankful that Jack is now doing well, he still has a life-threatening condition and his medical complications put significant pressure on the family.

The respite care provided by Very Special Kids Hospice has allowed Jack to enjoy several stays while Belinda, Craig and their second child Lucy take a much-needed break.

Belinda said she feels confident that Jack is in the very best of care.

“The second time Jack stayed, we took the big step of going interstate for the weekend to Tasmania to watch the football with another couple. We slept in and had some respite, it was just fantastic. We hadn’t done that for eight years,” she said.

From 22 to 23 May more than 1,000 participants will run the 24 Hour Treadmill Challenge to raise funds for children in 24 hour care at Very Special Kids Hospice. To sponsor a runner visit