Monthly Archives: May 2016

24 hour challenge raises $728k for kids in 24 hour care

32 treadmills were kept in continuous motion for 24 hours from 20 to 21 May raising $728,400 for children in 24 hour care at Very Special Kids Hospice in Melbourne.

1,150 participants including 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.

Footy players from North Melbourne, St Kilda, Melbourne and Western Bulldogs came to show support, as well as The Hon. Kelly O’Dwyer MP and Councillor Jami Klisaris, both jumping on a treadmill to motivate and entertain participants.

By the end of the 24 Hour Treadmill Challenge participants had covered over 5,800 kilometers, guzzled 570 litres of water, listened to more than 500 songs, and far exceeded the event’s goal to raise $700,000 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.

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

Click here to view more event photos.

A 15 year old girl’s insight to living with muscular dystrophy

My name is Jasmine and I am 15 years old.

Earlier this year I attended the Very Special Kids 30th Anniversary Gala. In front of 300 people, I made my way on stage and I shared my story. My heart was racing and my nerves were high.

Like most people public speaking makes me nervous, but I know I am lucky to have a voice, I know I’m lucky I have the ability to express myself, especially since I have met so many that can’t.

I have Muscular Dystrophy. A rare genetic condition that that occurs one in 3,500 boys born and one in 50 million girls born around the world.

Not many people know what it means to have Muscular Dystrophy but to put it simply, my muscles are failing me. It’s a neuromuscular disorder that causes progressive and irreversible, deterioration of the muscles in my body.

I learnt how to walk as a toddler but over time my body become too weak and now I am in a wheelchair. My lungs are too weak to breathe on my own during the night. Every morning when I come off my breathing machine, I learn how to breathe again, before getting ready for school.

One of the lucky ones.

My life can be a challenge, but so can everyone’s. I am lucky to have the most amazing family and friends whose tireless devotion and compassion to giving me the best life possible, has provided me with the most amazing opportunities and experiences. Like the opportunity to meet the team at Very Special Kids, who provide care to over 900 families each year. Families just like mine.

You might think I am unlucky but I still think I am one of the lucky ones.

Over the years the Very Special Kids Hospice has felt like my second home. So when I say Very Special Kids provides care, I don’t think that really covers what they do. I might be a very special kid, but they are a very special organisation.

Mum says as a child I was very matter of fact about my condition, one day I turned to her and said, ‘can’t stand up’ and that was the beginning. I can’t remember a lot of the early days but I do know that they were probably the hardest for my family, which is why I am so thankful to know that Very Special Kids was around from the beginning.

Family means everything.

When I hear mum talk about what it was like for her and dad to learn that I wasn’t going to grow up healthy and strong like the other kids, I am so glad that Very Special Kids was there to help. My family means everything to me and from the moment we needed them Very Special Kids was always around.

When things started to get really tough, Anne came into our lives. She was our Very Special Kids home volunteer, she would visit my brother and I, so mum and dad could run errands or just have a moment to themselves. She’s not our volunteer anymore, but she’s still our friend.

As a family we have had holidays at the Very Special Kids Glen Osmond Farm, it’s equipped with wheelchair access and carer support, which means everyone gets a break, but we all get to be together. Most recently I’ve been attending the Girls Weekends at the Hospice, where I get to do so many fun things, with other kids just like me.

Making friends and life at school.

Day to day I sometimes feel like the odd one out, but at Very Special Kids, I feel like l belong.

No one looks at me as the girl in the wheelchair, or the girl with tubes up her nose, I’m not Jasmine the girl who can’t walk or the girl that never seems to grow. I am just Jasmine, a teenager, who loves to laugh, watch movies and read comics.

The Very Special Kids Hospice means so much to me, and I know it does for so many other kids too. Very Special Kids helps each of us find our way through, it’s a place where we can come together, and our unique conditions are not treated as something to be scared of. We can be ourselves, we can feel ‘normal’.

I’ve met some of my closest friends through Very Special Kids, I love talking to my school friends, but they don’t always understand.

There are girls at school who worry about which boy doesn’t like them, but I guess my priorities are different. My family and my friends are what matter to me.

I met Lucy at a Very Special Kids Girls Weekend, she has Cystic Fibrosis. We don’t get to talk every day, but when we do, we pick up the conversation right where we left off. We can talk about everything, because we go through things that not many other kids our age go through. The countless medications and hospital trips, the fears, the worries, the challenges and the wins, no topic is off limits.

Without Very Special Kids, I would never have met Lucy. And without support from the community Very Special Kids wouldn’t have been able to run the Girls Weekend at the Hospice that we met on, so thank you.

My brother Jacob.

It’s not just me that loves Very Special Kids, but it’s a special place for my brother Jacob too. No one asked for my condition and no one is to blame, but I know it affects everyone in my life. Maybe Jacob the most.

Jacob is 13, he has had to live with my condition his whole life, he would never say it but I know there are times when has had to make sacrifices and come second to my needs. But at Very Special Kids, he is given the chance to be around other kids, and more than anything he can just forget for a moment and have some fun.

Thank you for your support.

I have written this letter as my way of saying thank you. To anyone who helps support Very Special Kids, please know that your support has made such an incredible difference to my life and to so many others.

Very Special Kids is the only children’s hospice in all of Victoria, and they care for over 900 families just like mine each year. It’s my wish to help raise as much money as I can to help ensure that Very Special Kids can help all the families out there just like mine.

We are often the families that people forget about, but I know Very Special Kids will never forget us. So please take a moment and make a donation, to help provide love and support where it’s needed most.

Thank you.
Love Jazzy

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

Volunteer Appreciation Event

As National Volunteer Week 2016 draws to a close, we would like to acknowledge and sincerely thank all of our volunteers.

Last night we hosted a Volunteer Appreciation Event to recognise the wonderful contribution volunteers make to Very Special Kids. Services Awards were presented by Sister Margaret Noone to volunteers who have completed 5, 10, 15 and 20 years of service.

It was a wonderful celebration and a pleasure to acknowledge many milestone service awards achieved by a variety of committed and caring people.

We say it time and time again, but Very Special Kids simply could not do what we do without the support of our volunteers. To put a dollar value on the contribution of the time spent supporting us would be incalculable and impossible to afford to continue providing the range of services we offer to support our families.

The generosity of 180 Friends Volunteers who assist us with fundraising and a team of over 250 Family Support Team volunteers who commit many hours working directly with our families ensure that we can continue providing the best possible care to over 900 families throughout Victoria each year.

On behalf of everyone at Very Special Kids, thank you!

20 Year Service Award

  • Jane Ansell (Friend & ex-FST Vol)
  • David Gibbs (Foundation)

15 Year Service Award

  • Joan Foley (Friend)
  • Heather Hardiman (Friend)
  • Desley Scott (FST)
  • Margaret Madge (FST)
  • Jason Robinson (FST)
  • Grant Smith (FST)
  • 10 Year Service Award
  • Ass Prof Sharon Goldfeld (Board)
  • Jo Mooney (Friend)
  • Elly Parker (FST)
  • Amanda Springer (FST)
  • Moira Fitzsimon (FST)
  • Terena Lane (FST)
  • Louise Wallace-Smith (FST)

5 Year Service Award

  • Galvin Slater (Foundation)
  • Heidi Roberts (Board)
  • Wendy Thorpe (Board)
  • Caroline Bird (Friends)
  • Maria Constantinou (FST)
  • Margaret Jackson (FST)
  • Eunice Maclean (FST)
  • Lisa Morrison (FST)
  • Zara Raffan (FST)
  • Georgina Rippon (FST)
  • Georgia Rogers (FST)

Special Acknowledgement Award

  • Art4Kids

Giant piggy bank drivers wanted

p24 Bill Hearn2One of our very special volunteers, Bill Hearn, has spent the past 15 years putting on a pink pig suit and travelling across Melbourne and regional Victoria during the Piggy Bank Appeal. We’re now in search for more Bill’s!

The Very Special Kids Piggy Bank Appeal was launched in 1998 as our major annual fundraising appeal. Since then we have raised over $17 million through the generosity of the Victorian community.

Our five iconic giant pink Piggy Banks travel throughout Victoria during September accompanied by a wonderful group of volunteers who visit hundreds of towns and suburbs to collect donations, sell merchandise and raise awareness of Very Special Kids.

Bill Hearn decided to become a volunteer while his wife was working for Very Special Kids.

“I was really moved by the way Very Special Kids helped families in need. I found out they had a volunteer program and decided to get involved” Said Bill.

Bill’s volunteer role involves driving the giant Piggy Bank trailers around Victoria, selling merchandise, collecting donations and talking to local communities about the work of Very Special Kids.

We are currently recruiting volunteer Piggy Bank Drivers. We will provide towing-training (to be held on Saturday 9 July) and opportunities to practice parking and driving with the giant piggy banks on the back of our cars.

To be a Piggy Bank driver you will:

  • Have a desire to raise money for Very Special Kids by selling merchandise and talking to our sponsors and the public.
  • Travel to metro and regional locations, working collaboratively with volunteer crews, driving long distances and possibly staying overnight at various trail locations (at our expense).
  • Take photos, dress up in piggy suits and spread the word about our unique services.
  • Have a great driving history and (possibly) experience towing – not a necessity but would be an advantage for volunteer applicants.

Bill explains that “when you get to meet the children and see the parents, they are the real heroes, and the decision to help is not a difficult one at all.”

Please email your expression of interest to Lou Cooney lcooney@vsk.org.au Position Description available on request.

Ladies lunch celebrating mothers

The room was full of love and generosity as we remembered the women most important in our lives whilst raising funds for children with life-threatening conditions.

Hosted by TV personalities Rhys Uhlich and Lee Chan, the Very Special Kids Mother’s Day Lunch was a gorgeous afternoon held at the Royal South Yarra Lawn Tennis Club.

Guests gave generously which resulted in us raising more than $25,000. This will help cover 20 bed nights accommodation for children to stay at the Hospice.

Our very special guests, Christine Ferra and Carey Avil, two mums supported by Very Special Kids, shared their touching stories with our guests and gave insight to living with a child who has a life-threatening condition.

Thanks to the lovely ladies from Elite Hair and Makeup Academy for ensuring our ladies were feeling glam and looking their best, as well as Miamba Wellness Centre for providing massages so we felt our best too!

Special thanks also to Royal South Yarra Lawn Tennis Club, The Logan Band, Flowers Vasette, Premium Chocolate Company, Advent Printing, Make It Happen and all our raffle, live and silent auction donors. Without them, this event would not have been possible.

Q&A with Volunteer Coordinator Nathan Brown

To kick off National Volunteer Week, we chat with our Family Support Team Volunteer Coordinator, Nathan Brown who shares his insights and words of inspiration on all things volunteering, why he got involved with Very Special Kids and advice for those wanting to make a difference.

What do you do in your role at Very Special Kids?
I coordinate the recruitment, training and care of our Family Service Volunteers who work directly with the families we support. I started with Very Special Kids in November of 2014

What difference does volunteering make to the lives of the families you support?
The truth is, we could never afford to provide the level and breath of support we give families without our volunteers. I can only imagine what it must be like as a parent sitting by a hospital bed wondering what the future holds. To have someone sit with your child while you go for a walk to clear your head, or take a sibling to the Starlight room to expel some energy. To know that there is someone who will read to your child while they are staying at the Hospice and will give them the sole focus and attention. To have a volunteer give up time on their weekend to mentor and befriend and journey with your children… All of these things reduce the feeling of isolation for families. It means there is another person out there that knows their child, knows their name, and knows their story.

How did you first become involved with Very Special Kids?
In 2013 my wife and I decided it was time to shake things up a bit. I was in a job and position that I always thought I wanted, however when I got there I felt bored and uninspired with a deep sense that there has to be more to life than this. So we resigned from our jobs and decided to take 12 months to get involved in the kind of things that really resonated with kind of life that we wanted to live. As part of that quest we came to an information night in May 2014 after trawling through countless volunteer opportunities. I really fell in love with work of Very Special Kids, and the funny thing is that as I drove away from the information night, I talked with my wife about how I think I could bring a lot of value to the Volunteer Coordinator Role.

What inspires you to work at Very Special Kids?
I don’t know what it’s like as a parent to receive a life altering prognosis for your child, but I do have a sense of the impact it makes on a family not just in that moment but down the track also. I love the work of Very Special Kids, and especially what the Family Support Team and Family Service Volunteers do because it’s needed. It’s really no one’s job to provide support to an isolated parent, or sibling or sick child, but I can only imagine what our community might be like, if more people saw that it was everyone’s responsibility to support both practically and emotionally those that need it.

Have you done any volunteer work yourself?
My wife and I volunteer at Fareshare. Fareshare rescues food, and prepares about 25000 nutritious meals a week, resourcing 400 community organisations around Victoria. They are Australia’s largest charity kitchen, and I love the people you meet around the benches, listening to peoples stories as we chop, make sausages and bag up stews. I also lead a small church my wife and I started in 2014. It too is completely volunteer led which brings down our overheads greatly. As a community we partner with a number of organisations, resourcing them financially, with man power and advocacy in whatever ways we can help.

What advice would you give to people thinking about volunteering?
I think everyone should volunteer! Volunteering is an action that we can make that creates the future we want to see for ourselves, kids and community. I think there is something in everyone that attunes them to needs and areas of justice around us. We are all passionate about different things, and those areas of passions, observations, disappointments or hope, whatever you want to call it are the things we should lean into a little more and give time to. When we do our awareness increases, we ourselves are changed in a positive way and become part of the solution.

Volunteering at Very Special Kids is personally rewarding and cares for children and families in need. If you are interested in becoming a volunteer you will need to attend one of our regular information sessions, the next one is on May 25.

The importance of respite

Access to Very Special Kids Hospice, as well as the adjacent family accommodation, is very important to the Bozinis family.

Six-year-old George has an undiagnosed mitochondrial disorder. He is developmentally delayed, doesn’t walk or talk, and is fully reliant on someone to feed, toilet and bathe him.

His mother Cristina describes George as being a “very cheeky boy who has his own specialised walker that allows him to move around and gets up to mischief. He also loves playing with balls, horse riding and swimming at school.”

The Bozinis family access respite at Very Special Kids a few times a year, usually staying for three days at a time.

“George stays in the hospice and we visit him during the day and then we stay in the family accommodation and have some respite at night. At first it was hard to leave George at the hospice, and he is very attached to his dad. Being able to stay very close at the family accommodation, but still have some time to ourselves at night, works well for us,” Christina said.

Cristina Bozinis will be participating in the 24 Hour Treadmill Challenge as a part of the Northern Trust team, which is a team of her colleagues who are joining together to raise funds for children just like George.

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

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Acknowledging motherhood: thoughts on Mother’s Day from bereaved mothers

It is said that the relationship between a mother and her child is an unprecedented bond, and at Very Special Kids we witness this every day.

Mother’s Day is most commonly a time of celebration and a chance for children to express their love and appreciation, as well as mothers themselves to rejoice in their own motherhood. However, for mothers who have lost a child, Mother’s Day evokes bittersweet emotions. It can be a challenging time and their experience of motherhood is too often overlooked by society.

Sonja Jamsek, who has been coming to our ‘Creating Memories’ scrap-booking sessions at Very Special Kids for four years now, knows this feeling all too well. Summer was just sixteen hours and nine minutes old, when she was in her mother Sonja’s arms at the hospital and passed away with no warning, from an unknown cause.

Sonja often receives comments from people trying to offer support, saying as awful as it is, she is lucky that it wasn’t later on in Summer’s life, because it may have been harder for the family. People simply struggle to understand, not because they don’t care or sympathise, but because unless you have experienced the loss of a child, it is incomprehensible. “When is it ever the right time to lose a child?” says Sonja.

“One thing’s for sure, I am a mother of three children. People see me as a mother of two but just because Summer’s not here doesn’t mean I’m not her mother.”

On the subject of Mother’s Day, Sonja explains that it’s a sad and happy day, all at once. On this day, she tries to do something that reflects each of her children, including Summer. Sonja calls her time at our scrapbooking sessions, her “Summer time”.

“It’s my time to spend with Summer uninterrupted. I’m around people who understand. If I want to talk about Summer, or even just cry, the acceptance is there.”

Kara Chunn, who also attends regular scrap-booking sessions at Very Special Kids, insists on celebrating the joy and honour of being a mother on Mother’s Day, despite losing one of her children Coco, at two and a half years of age.

Coco was born with a heart condition and in her short life she endured six open heart surgeries and ten procedures. “She was a gentle, happy and kind soul who loved music and all things Playschool. I guess she never understood what all the trouble was. She just took it in her stride, ‘better now?’ she would ask” Says Kara.

“It’s a bittersweet feeling….I am so grateful and blessed to have been Coco’s mother but so sad and empty at the same time thinking of what could have been.”

On Mother’s Day, for women who have lost a child, had a miscarriage, stillbirth or struggled to conceive, feelings of intense pain, unworthiness and isolation can be triggered. For, no matter how long one has their child, experiencing loss changes you, and that motherhood most certainly needs to be acknowledged.

When asked what advice she would give other mothers coping with loss on this challenging day, Kara said “Go gently, and be kind to yourself”.

If you want to cry, please cry. If you want to celebrate, please celebrate. If you want to honour your motherhood, please honour it. There is no right way, no rules to follow.

Happy Mother’s Day for this Sunday from Very Special Kids, to all mums, bereaved and not, thank you for everything you’ve done and continue to do.

Our next Creating Memories scrap-booking session is on the 31st of May at 10.00am. This is open to all bereaved parents. For more information click here.

Very Special Kids treadmill dance competition

In the lead up to the Very Special Kids 24 Hour Treadmill Challenge, we are inviting the public to take part in the “Very Special Kids Treadmill Dance Comp” for a chance to WIN one of three fitness prize packs worth up to $400 from our partners The Fitness Generation and TRUE Fitness.

The Very Special Kids 24 Hour Treadmill Challenge will see participants join together to keep treadmills in constant motion for 24 hours, while raising money for children with life-threatening conditions in 24 hour care at Very Special Kids Hospice. The event is made possible by The Fitness Generation and TRUE Fitness, who donate the treadmills.

Help us celebrate the event and the incredible support we receive by filming yourself dancing on a treadmill and posting the video on your social media account.

How do I enter?

  1. Film yourself doing a dance on a treadmill
  2. Post the video to your Facebook, Instagram or Twitter account and, tag Very Special Kids (Facebook @Very Special Kids, Instagram: @veryspecialkids, Twitter: @AuVSK) and, include the hashtags #vsktreadmilldancecomp and #truefitnesstech

Three lucky winners will be chosen for their creativity and originality.
The competition opens Monday 2 May 2016 and closes midnight Saturday 21 May 2016.

Competition Terms and Conditions