Monthly Archives: April 2016

Q and A with Hospice nurse Paula Mullin

In the lead up to the 24 Hour Treadmill Challenge from 20 to 21 May, we interviewed Paula Mullin, a Very Special Kids Hospice nurse, about what inspires her and the advice she has for 24 Hour Treadmill participants.

What do you do in your role at Very Special Kids?
Carry out day to day care including comforting and playing with the kids, assess and monitor health, educate parents regarding best practice… and of course have fun!

What difference does the Hospice make to the lives of the families you support?
The hospice provides specialist care that is not available at other facilities including nursing, art and music therapy as well as essential support and care during end of life.

What inspires you to work at Very Special Kids?
It’s one little thing I feel I can do to make life a bit easier for the families we support. I love seeing the look on the children’s faces during special activities and outings.

Why should people fundraise to support the Hospice?
To fund valuable programs to enrich the lives children and adolescents with life threatening conditions.

Do you have any words of advice for participants in the 24 Hour Treadmill Challenge?
Remember that every dollar you raise goes towards providing a warm, unique and specialised service for families. Without support, this service wouldn’t be available and we rely on your help.

To sponsor a runner in the 24 Hour Treadmill Challenge and help us raise more than $700,000 for children with life-threatening conditions visit www.vsktreadmill.org.au

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Very sick, very special, and very well looked after

They say home is where the heart is and for this family, it’s all about sticking together. Alissa and Adam Higgins, parents of 15-year-old Jerome, or as they call him Jerry, 9-year-old Lily and 18-year old Claire, want nothing more than for their children to be happy and have the companionship of their entire family.

In 2001, when Jerry was just 3 months old he was diagnosed with Moebius syndrome and osteoporosis. In 2002, his father Adam was deployed to Afghanistan with the Australian Defence Force (ADF), but quickly returned home after a couple of months due to complications with his son’s illness. Adam is still a member of the ADF and fulfils his commitments at both sea and shore to this day. Jerry has since been labelled with complicated issues at later stages, these include epilepsy, autism and cerebral palsy. This means he is ambulant yet requiring assistance of a wheelchair when venturing outside the home. Jerry is also non-verbal and is non-orally fed

A lot of the family time for the Higgins was in hospital early on, as they strived to stay together. Even great grandpa was always around; making sure that feeling of home was wherever they were.
In 2002, after Jerry had been in the ICU, Alissa and Adam were referred to Very Special Kids by The Monash Children’s Hospital, as it was now very clear it was a life-threatening condition.

Alissa and Adam quickly came to find how helpful the support and facilities offered by Very Special Kids were, not only for Jerry, but for themselves and their daughters Claire and Lily.
While they remained dedicated to keeping the family together as much as possible, it was nice for Claire, only 3 at the time of Jerry’s birth, to be receiving some extra company that her parents couldn’t give to her as much as they would have liked to.

Alissa being Jerry’s full time carer, was especially thankful for the Family Support Worker, as she “gave us that assurance, that we were going to be ok, we would have our bad days and she let me know that that’s ok”.

Although many of Very Special Kids services were used by the Higgins family, it took Alissa 13 years to work up the courage to let Jerry actually stay in the hospice. As like any parent, the idea of being away from her ill child was a little hard to comprehend and she had grown accustomed to doing everything herself. It isn’t always easy to admit you need help but now Alissa see’s the benefits not only for her but for Jerry too “he loves it there, he gets a lot of attention, it’s all on him”.

“Jerry gets sick very easily so he hasn’t been able to maintain a regular school attendance. But at Very Special Kids he gets to socialise without the worry of getting sick… And it’s good that he loves it because you don’t feel that sense of guiltiness as a parent when you put your child in care.”

Alissa told us their families unity has increased since Jerry has stayed at the hospice, as having time has allowed for a less hectic lifestyle and they get to be together, and that is what they truly value most, “we’re lucky in that way”.

All the funds you raise at the 24 Hour Treadmill Challenge will go directly to children just like Jerry, who receive 24 hour specialist care at Very Special Kids Hospice. To sponsor a runner visit www.vsktreadmill.org.au

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Siblings swamped with fun

Siblings of children with life-threatening conditions enjoyed a fun day of activities and meeting new friends while discovering the secrets of the stinky swamp.

Three separate Very Special Kids Sibling Days were held in the April school holidays, where children participated in a range of engaging and interactive activities.

The eager and enthusiastic kids were grouped into different teams, which were named after swampy and scaley creatures such as lizards, turtles and frogs. Each team worked together to solve mysteries and gain clues that would lead them to find the friendly swamp monster!

From playing celebrity heads and guessing mystery creatures to obstacle courses with limbo and potato sack races, the kids made it through all challenges showing great team work, problem solving skills and of course lots of fun and laughter.

Speaking of fun… Where do swamp monsters go for a holiday? Lake Eerie!

After lunch it was time for some craft-ernoon fun and each child had the opportunity to personalise and decorate a special treasure chest with glitter, sparkles and colourful paper.

The Very Special Kids Sibling Support Program was created to address the impact on children, of having a brother or sister with a life-threatening condition. The activity-based Sibling Days help kids explore their emotions, enhance their self-esteem and meet peers.

 

Superstar fundraiser leads team to victory

How some healthy competition led Mike Dozier to end up being the highest individual fundraiser of the 24 Hour Treadmill Challenge in 2015.

In 2015, Andrew Penca, MD of Cummins signed up his company for the first time. Andrew challenged his mate Mike Dozier, MD of Paccar to sign up so they would have a bit of competition.

Taking on the challenge, Natalie Caia from Paccar jumped on board as the Team Captain and with her enthusiasm and commitment to the cause, Natalie led her team to victory.

Mike Dozier ended up raising a total of $24,005 being the highest individual fundraiser of the 24 Hour Treadmill Challenge in 2015. What an incredible achievement!

So how did he do it? He rallied up a large support base by asking his family, friends, clients and suppliers to get behind him. The more people you tell, the more likely you’ll generate a big support crew.

Paccar was also the highest Fundraising treadmill team raising more than $36,000.

All the funds raised at the 24 Hour Treadmill Challenge will go directly to children who receive 24 hour specialist care at Very Special Kids Hospice. To sponsor a runner visit www.vsktreadmill.org.au

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Caring for Josh at the hospice

Twelve-year-old Josh Winrow has a rare epileptic syndrome named Lennox-Gastaut that causes potentially fatal seizures. He also has an intellectual disability and is non-verbal.

As well as providing expert medical care for Josh at Victoria’s only children’s hospice, Very Special Kids also support all members of the Winrow family, which includes his mother Vanessa, father Scott and eight-year-old sister Phoebe.

Very Special Kids Hospice, with its 24-hour nursing care, is the only place Vanessa can access when she needs to have longer stays away from Josh.

“When Josh goes to the hospice I can walk out the door and I know he’s going to be fine. There’s a real sense of security that he’s in good hands.”

“Josh loves going to the hospice. He’s got lots of doting carers that know him well. Earlier this year, I was able to take a weekend away with my sister, while Josh stayed at the hospice. The hospice allowed me to take the time out I needed,” Vanessa said

All the funds you raise at the 24 Hour Treadmill Challenge will go directly to children just like Josh, who receive 24 hour specialist care at Very Special Kids Hospice. To sponsor a runner visit www.vsktreadmill.org.au

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A Dinosaur School Holiday Program worth RAWRRR-ing about!

During the April School Holidays, children staying at Very Special Kids Hospice traveled back in time to when dinosaurs roamed!

With a prehistoric dinosaur theme, the Hospice School Holiday Program was action packed with a variety of stimulating, interactive and creative activities. Children had the opportunity to explore the world of dinosaurs through stories, outings and hands on experience.

From visits to the Dinosaur World Museum, engaging in Volcano Workshops to cooking up a storm in the kitchen making “Jurassic Juices” – it was safe to say the kids had a great time worth RAWRR-ing about!

Other arts and crafts activities included making dinosaur hand-prints, creating “Jurassic Jeeps” out of cardboard boxes and giving wheelchairs a makeover, as well as building volcanoes out of paper mache.

Operated four times each year by Very Special Kids Hospice, the School Holiday Program ensures that children with life-threatening conditions have access to activities and outings in a safe and controlled environment.

A team challenge for children in 24 hour care

From 9am on Friday 20 until 9am on Saturday 21 May 2016, the 24 Hour Treadmill Challenge will bring over 1,000 participants together to keep our treadmills in continuous motion for 24 hours.

An inspiring atmosphere is created when celebrities, DJ’s and massage crews motivate teams of runners while they complete a challenge for children in 24 hour care. The around-the-clock activity steps up a notch after dark by going bright and neon at night.

Only metres away from the treadmills at Very Special Kids Hospice, children with complex medical needs will be receiving specialised nursing care. Our hospice is the only facility of its kind in Victoria and offers families access to planned and emergency respite care. It is also a place where children can receive end-of-life care in peaceful surroundings.

Visit the 24 Hour Treadmill Challenge website.

For more information, please contact Kristi Ingrilli on 03 9804 6223 or kingrilli@vsk.org.au

 

 

Michael Wasley appointed as new CEO

We are pleased to announce that Michael Wasley will be joining Very Special Kids as our new Chief Executive Officer from Monday 2 May.

Michael comes to Very Special Kids from Karingal, a large not-for-profit provider of disability services throughout Victoria. He brings significant senior business leadership experience, having held a number of management positions at Karingal.

Michael’s most recent position was Executive Director of Strategy & Partnerships and prior to that he was Executive Director of MatchWorks, which is a subsidiary of Karingal that provides specialist employment services to people with a disability, medical condition or injury.

In addition to his management experience, Michael also holds three tertiary qualifications with a MBA, Postgraduate Diploma in Rehabilitation Counselling and a Bachelor of Science.

Chairman Peter Polson said that Michael brings to Very Special Kids a deep understanding of the not-for-profit sector and the strategic and operational issues that it faces.

“In addition to his strong academic qualifications, the Board was impressed with Michael’s significant senior business leadership experience. In his various management positions at Karingal, many important partnerships were initiated under Michael’s leadership that furthered the organisation’s capability and built a significant senior executive group.”

Michael was appointed to the position after our previous CEO Sarah Hosking moved to New South Wales to take on the role as Chief Executive Officer at National Breast Cancer Foundation.