Monthly Archives: May 2017

24 hour challenge raises $822k for kids in 24 hour care

33 treadmills were kept in continuous motion for 24 hours from 26 to 27 May raising $822,668 (and counting) for children in 24 hour care at Very Special Kids Hospice in Melbourne.

1,008 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.

Footy players from Carlton, St Kilda and Collingwood came to show support, as well as Michael O’Brien MP and Mayor Jami Klisaris, both jumping on a treadmill to motivate and entertain participants.

We also received a visit from Channel 7’s Jane Bunn and Peter Mitchell which sure did excite our participants, especially when they got on treadmills themselves and still happened to look perfect every step of the way.

By the end of the 24 Hour Treadmill Challenge participants had covered over 6,100 kilometers, guzzled 598 litres of water, listened to more than 500 songs, and far exceeded the event’s goal to raise $800,000 through donations from friends and family.

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 $161,384 and the highest fundraising team, which went to DFP recruitment who raised $40,755.

The highest fundraising individual was awarded to Richard Burnet, who was running in his team dedicated to his son’s Sebastian and Charlie, who are supported by Very Special Kids. Richard raised a massive $20,535 and stayed for almost the whole 24 hours to support his team mates.

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 7 News, Smooth FM, NOVOFIT and TRUE fitness.

Click here to view more event photos.

Creative memories at Very Special Kids

Scrapbooking involves using your treasured photos and memorabilia to create beautiful pages which are then added to a special album.

Creative Memories is all about making a special memory album by using your precious photos to create album pages that show others the life of your beautiful child and help you to celebrate that life. Immersing yourself in designing, cutting, selecting and pasting, in the company of others who have also experienced the death of a child, can be a rewarding and comforting experience.

Very Special Kids spoke to Stella, a bereaved mother who started going to the Creative Memories program at Very Special Kids not long after the death of her beautiful baby boy, Rafael. As Stella said, “I was interested in scrapbooking but was firstly yearning to connect to others as I was only recently bereaved.”

Stella found the experience to be wonderfully helpful. “The first time was a healing, beautiful experience. I found everyone sensitive and lovely and there was a lot of joy.”

Immersing herself in the colourful paper, stamps and stickers under the gentle guidance and design know-how of Gerry, the facilitator, helped her to start creating a personal album in memory of her boy. Stella also found that seeing other families’ photos and sharing each other’s stories was a bonus on top of the connection she experienced.

After her first session Stella has found herself going back each time. “I went back because I found it joyful. I didn’t realise how therapeutic it would be to be creative while grieving for my son, and showing people my scrapbooking always brings much happiness.”

If you are supported by Very Special Kids and would like to attend, Creative Memories is held at Very Special Kids Malvern from 10:00am – 2:00pm six times per year. All sessions are free and a light lunch is provided. Child minding is available. For more information contact the duty worker at Malvern on 98046253.

Very Special Kids holds inaugural Autumn Classic

Last Friday morning Very Special Kids held the inaugural Autumn Classic cycling event and raised over $42,000!

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 was in essence a virtual cycling race with seven 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. Team Grupetto, took out the win and took home the Autumn Classic perpetual trophy, with riders Chris Mallalue, James Robinson, Ryan Bell and Justin Williams. Second and third place went to CMC and Spiders. Each team went their absolute hardest and it was amazing to see such a serious effort from everyone.

We had three winning individuals who received medals, including Richard Abel (CMC) coming in at first, Shannon Laffey (CMC) coming in at second, and Ryan Bell (Grupetto) coming in at third.

Thank you The Cycling Fix, Bridged, Cummins, Mercedes-Benz Toorak and Daimler for all of the support, as well as our amazing MC Peter Montgomery. We couldn’t have done the event without all of the support we received, as well as the assistance from Paul McCann and Andrew MacMillan from our Foundation for getting everyone there.

It cost’s 7.5 million dollars for Very Special Kids to run each year, and because of this it is important that these events take place and grow, we look forward to seeing the Autumn Classic get bigger and better as the years go on!

Honouring the memory of Charlie

This year Catherine, Stuart and their daughter Alice Matthews will be participating in the 24 Hour Treadmill Challenge, in honour of their daughter and sister who died, Charlie.

Charlie passed away in the Very Special Kids hospice in December 2013 at only 7 months old, and since then the family have been slowly putting the pieces back together.

Originally Catherine and Stuarts number one priority was “helping Charlie’s older sister, Alice, now five, through her grief and her struggle to understand why her sister had to go to Heaven, why we can’t visit her there and why she can never come back” says Catherine.

Charlie was born in May 2013 and was a happy and healthy little baby. In the first few months of her short life, everything seemed to be going as you would hope. She laughed, she cried, she fed and slept well, and loved watching her big sister.

Then at 5 ½ months of age Charlie suffered her first seizure and was rushed to hospital. The seizures became more and more frequent, and didn’t respond to medication.

She spent the following 7 weeks in Intensive Care at Monash Medical Centre with no explanation as to why this was happening. During their time at Monash Medical Centre, the Matthews were put into contact with Very Special Kids.

“Around Christmas time, it was clear that Charlie didn’t have much time left, and Very Special Kids made special arrangements to have our family move into the Hospice over the Christmas/New Year period.

We were grateful that we could spend Charlie’s final days away from the medical environment of Intensive Care, and be in a place that was so peaceful, private, and supportive” said Catherine.

The family had an ongoing relationship with their support worker to begin with and Alice will also participate in sibling days from this year onwards. She has also been given a second chance at being an older sister with the arrival of her beautiful, healthy baby brother Ted, who is just one-year-old.

“The treadmill challenge has been such a positive way to stay involved with Very Special Kids and to help raise funds and awareness for this very special organisation. It’s a way to both honour the memory of our Daughter through forming ‘team Charlie’ and also to in some small way, give back to this organisation who has done so much for our family and supports more than 900 families across our State” said Catherine.

Team Charlie is made up of family, friends and Stuart’s work colleagues and Stuart has participated every year since they lost Charlotte. To support families and teams like this, head here.

Friends or volunteers? We can’t tell the difference!

Volunteering is a fundamental part of what Very Special Kids does. We currently have 720 volunteers generously give their time to help support families of children with life-threatening conditions.

Very Special Kids provides three volunteer programs, including Corporate, Family Services and Friends Volunteers. The role of the Friends Volunteers is to provide administration and practical fundraising support, however they often go beyond that.

Liz Gidley, has been a loyal volunteer at Very Special Kids for 9 years now, originally deciding to get involved in order to contribute her spare time to something she felt was important in the community.

“Over the years I have been involved in most fundraising activities, presently helping with the Fashion Sale and 24 Hour Treadmill Challenge.

Knowing that the efforts of volunteers like me directly help with the running of the Hospice and family support is very important to me. I love being of assistance” said Liz.

Lou Cooney, Friends of Very Special Kids Coordinator, explained that the organisation was actually founded by volunteers and wouldn’t have been able to succeed without them.

“People willingly came to help raise money to ensure our organisation grew and continued to support children and their families with life threatening conditions. They also came to work with the kids and very soon we became known as an organisation that had more volunteers than staff” said Lou.

Lou also expressed that the volunteers whom work for the organisation have a willingness to go above and beyond to help those in need. From “working with families to gardening, sewing, administration, making thank you calls, couriering, maintenance, driving giant piggy banks around Victoria, rattling tins and dressing in piggy suits. You name it, they do it!”

Whilst the volunteers certainly work hard and have schedules to follow, Liz explained that she has “so many treasured memories and so much fun!”

Volunteers at Very Special Kids are often long serving and constantly feel compelled to reach out and help their cause.

“I think our volunteers feel a very strong connection to our organisation knowing that we are the only one of its kind in Victoria. They initially think that they are just helping someone else but volunteering is a two way street, you definitely get back more than what you put in” said Lou.

Many volunteers that work with Very Special Kids develop a greater sense of purpose, being appealed “to what the organisation offers to families facing such immensely difficult daily lives” said Liz.

If you are interested in becoming a volunteer for Very Special Kids head to http://www.vsk.org.au/support-us/individuals/volunteer/ or call (03) 9804 6222.

Supporting each other on Mother’s Day

Stacey Hector and Michelle Kaila are two mothers who have been supported by Very Special Kids, and have also supported each other, during and after the death of their children, six-year-old Marcus Hector-Parnell and three-year-old Isla Kaila.

On Mother’s Day, both mums have bittersweet emotions, particularly Michelle as this year Mother’s Day has also fallen on Isla’s birthday.

“I have always loved Mother’s Day, but since Isla died it’s a mixture of happiness and sadness. I look forward to spending time with my other two boys (Aidan 11yo and Noah 9yo) however this year will be extra difficult” said Michelle.

“It used to be a time of celebration but now it’s so hard” said Stacey, “some years I wish I could ignore the whole thing but I can’t do that for Molly (daughter, 11yo). That’s just part of being a mum, doing things for your kids because you love them – even though it’s difficult for you.”

Both mums agree the most important way others can support bereaved mothers on Mother’s Day is to acknowledge their child that has died.

“There seems to be this perception that I’ll get upset if Marcus is mentioned, however it’s often the opposite and not mentioning Marcus can upset me more” says Stacey.

Michelle relates, “Acknowledging Isla is still part of our family means a lot. I love when people text or email saying their thinking of Isla, especially on special occasions like Mother’s Day. Any chance of talking about her makes us really happy as we’re keeping her memory alive”

One of the most difficult questions both mums face is ‘how many children do you have?’ “I want to acknowledge Isla but sometimes it’s more about protecting the other person because the conversation often changes. I cope fine with answering, but sometimes other people get awkward” said Michelle.

“I’m a mum of two” said Stacey, “when Marcus died I didn’t suddenly stop being his mother, I will always be his mother.”

Since Marcus and Isla’s passing, the two families utilise the bereavement support services offered at Very Special Kids including bereaved family activities, bereaved sibling days, scrapbooking sessions and counselling through their Family Support Practitioner, Angela Flood.

It was through Angela that Stacey and Michelle were first introduced in 2013 at a Sibling Day for their other children, and Stacey now explains they share “an amazing connection.”

“My friends are supportive but Michelle is in a different league because of her experience. She understands me on a ‘mother to mother’ level that no one else can” said Stacey.

The Kaila family is spending this Mother’s Day at Glen Osmond Farm in Woodend, which is free family accommodation offered by Very Special Kids to families as a chance to relax and get away from the chaos of their every day lives.

“We love the farm because it’s a private space just for our family. It’s a time we can be away and reflect on the life Isla had with us” said Michelle.

The Hector-Parnell family will be spending Mother’s Day at home. “Molly will jump into bed with us and I will imagine what it would be like if Marcus was in there too. Molly knows I find it hard though, so she always tries to make it extra special” said Stacey.

Making a difference externally and internally – the benefits of corporate volunteering with Very Special kids

The Jellis Craig Foundation has been a major supporter to Very Special Kids for almost three years now, often engaging in corporate volunteering activities.

Very Special Kids Hospice is the only facility of its kind in Victoria and offers families access to planned and emergency respite, as well as end-of-life care. Because Very Special Kids offers its services free of charge it relies on the support of the community, whose donations and volunteering make it possible.

Whilst the Jellis Craig Foundation’s reach has been felt far and wide helping the lives of many, the board has been mindful to focus the partnership program to a limited number of organisations so the contributions can make a real difference to those in need. Very Special Kids is one of two whom they support, and they have certainly felt that difference.

Elisha Di Paola, an Assistant Group Operations Manager at Jellis Craig, explained that in order to get involved with Very Special Kids, “Jellis Craig went through a review process and surveyed all staff to gain insight on what types of charities they wanted to support. The results were very clear and high in support towards a local charity who provides assistance to the health and wellbeing of ill kids, as well as their families”.

There are many benefits to corporate volunteering, not simply to the organisations Corporate Social Responsibility objectives and to each individual personally, but also to team morale and internal relationships.

“Corporate volunteering has many benefits including team building, a rewarding feeling of giving back to the community, assisting with developing staff skills, helping staff to undertake challenges outside usual routine and strengthening our community connections.

Volunteering provides staff with a sense of achievement and fulfilment, better understanding of the community and overall worldly knowledge. It also assists in creating larger networks” said Elisha.

Not only do organisations get the benefits of aligning themselves with a worthy cause through corporate volunteering, but they also provide the perfect medium for their staff to gain an additional sense of purpose.

Elisha explained that “corporate volunteering helps to create a platform for staff to personally get involved in fundraising activities, and their reward is assisting to make a difference, with a connection to the community.”

The Jellis Craig Foundation supports Very Special Kids in nearly all of their fundraising events, including the Piggy Bank Appeal, their major fundraiser. Last year they even dressed up in pig suits and got the highest takings for a day during the appeal at Bourke St Mall in September, perhaps the auctioneers had something to do with that.

For more information on our current corporate volunteering and partnership opportunities, please contact Adisa Hubanic on 03 9804 6227 or ahubanic@vsk.org.au

A mother’s letter of gratitude

My name is Sue, I am the mother of a very special girl. We may never meet, but I wanted you to know what a profound effect you have had on my life.

My daughter Ayesha has a very rare progressive disorder of her arteries called Fibromuscular Dysplasia. Her condition caused her to suffer 3 strokes in the first 18 months of her life. We weren’t sure if she would survive, but even from such a young age her resilience was clear.

Ayesha’s strokes, caused brain damage and as result she also has Cerebral Palsy, Epilepsy and an Intellectual disability. She cannot do anything for herself and is completely dependent on her father and I. She cannot swallow, communicate or walk on her own.

We know our days with our daughter are numbered but we are grateful for every day we get together.

Although Ayesha will never be able to speak or walk on her own, I am so thankful for the vibrant and unique girl that she is. She is truly engaged with the world around her, she loves people, dancing, music, animals and books. Her smiling face and bright eyes, often hide the challenges she has had to endure in her short life, but when she smiles, we smile.

The life we had before Ayesha is a distant memory. I’ve gone from having a career to being a full time Carer for my daughter. Instead of the usual milestones a child reaches, today I still cope with feeding, washing, changing and monitoring Ayesha’s every need. Although this is not the life we planned, we are so grateful for all that our beautiful daughter brings to our life.

We are thankful for not feeling alone on this journey, as we have had Very Special Kids by our side on this 11 year journey with Ayesha, supporting us with a counsellor, a volunteer to visit our home and play with Ayesha and regular visits to the Very Special Kids Hospice.

We are so grateful for the chance to have some time for ourselves while knowing Ayesha is happy and having fun with other children just like her.

Very Special Kids, gives Ayesha and my whole family a reason to smile, when it feels like there is nothing to smile about. I know this is only possible because of supporters like you.

So when I say thank you, I hope you know that I mean it in ways I could never truly explain.

Sue, mother supported by Very Special Kids

Donate now to help support other families like Ayesha’s

An all round top guy – Nathan Brown

Nathan Brown is not only Very Special Kids Family Volunteer Coordinator, but he is also co-captaining two teams for the 24 Hour Treadmill Challenge this year and absolutely smashing fundraising, as well as dressing up!

We thought it would be a good idea to get some insight and find out how he has done such a good job in the last three years, here is our Q&A below:

What drives you to participate and fundraise for the 24 Hour Treadmill Challenge?

I believe that the work Very Special Kids does is so needed and necessary. Participating in the 24 Hour Treadmill Challenge is a fun way to further talk about what we do and explain the importance of paediatric palliative care and supporting families in our communities.

How do you motivate your team members and yourself to fundraise?

Reading and sharing the stories that are put out via social media really helps to stay motivated. It’s often not until you read the stories that a person really understands the significance of the work and you see where Very Special Kids is different. We try to remind people about what was achieved last year and encourage people to do even better. There are a lot of people that want to give to something, but are often not sure where to give it.

Why do you think dressing up is important for the event and fundraising?

Dressing up is just fun. One of the best parts of participating is walking in and seeing the creativity in the room. Of course you are welcome to come in your normal exercise outfit, but nothing beats the look on a work colleague or friend when they realise the clown in fancy dress is you. It creates meaningful memories and helps with fundraising side of things too.

What has been your most outrageous outfit?

Last Year’s sequined 70’s onesie was probably my favourite outfit, and it fitted so well. Not the most practical to run in but it looked good. I’m really happy how this year’s 80’s fashion faux pas is coming together, but we’ll keep that under wraps for now.

What advice would you give to others participating in the treadmill challenge?

My two pieces of advice would be 1. Don’t be afraid to ask people to partner with you financially, and 2. Come excited, have fun and share like crazy on social media so everyone knows what they are missing out on.

Nathan is a valued member of the Very Special Kids community and we just cannot wait to see his outfit this year. To support a runner like Nathan head here.

Family Service Volunteer offers invaluable support

Very Special Kids provides many families with trained family service volunteers, assisting in many different ways, including at the family home and sometimes when the child is admitted to hospital. The relationships formed have proven to be vital to what Very Special Kids does, and as part of National Volunteer Week we wanted to share a special story with you, from a very special two.

Amber, a very special kid, has a rare form of Leukodystrophy, is 6 years old and loves singing and dancing. Yvette, a trained volunteer with Very Special Kids, comes to play with Amber, and offers invaluable support for Amber’s mum Jenny.

Jenny

Six-year old Amber definitely gets her point across. She uses a special communication book and is at the ‘why’ stage, asking questions like why can’t I walk, or why am I in pain? She’s clever and understands everything that’s going on around her; she just can’t speak.

Amber has a rare form of Leukodystrophy. There are less than 100 cases in the world, and she’s the only one in Australia. Thank heavens for social media as it allows me to keep in contact with the other families overseas.

Yvette is a trained volunteer with Very Special Kids, and it’s nice for Amber to do things with her. They go for walks, read books and do crafty things. Yvette takes her to dance classes, which means that I can do something else, or I can be there like any other mummy and watch my kid dance. It allows me to be a mum, rather than a carer or a nurse. Sometimes I just want a break. Volunteers like Yvette make a big difference for us.

Amber’s vision is going, so I’m giving her as many experiences as possible. I go a bit crazy with things like birthdays. We have huge parties and invite all of Amber’s class and most of them will turn up. As her vision gets worse, it will be something special that she can remember.

Amber loves doing things just like any other kid. She loves singing and dancing. I love how she will give anything a try, so I’ve got no excuse.

Yvette

The first day Jenny’s mum had organised a princess theme for us as a way to get to know one another. We started reading princess books but it quickly turned to farts! Amber loves anything to do with the body and body fluids, and she finds farts hilarious. So we then played ‘Gas Off’. Jenny got the game to help Amber with counting, but Amber can’t stop laughing enough to count! So time blew by pretty quickly.

I love dancing with Amber too. The dance class we go to is really good fun. I used to be a dancer so I think it’s great.

It’s hard hearing when Amber isn’t well, but I’m also concerned about how Jenny is. Our open conversations are a great way for both of us to work out how much support she needs. We’re very lucky that we’ve got such a great relationship as it really helps to support Amber in the best way possible.

I’ve always wanted to volunteer. Very Special Kids had a great nine-session training program and I’ve learnt a lot about myself. I’m definitely stronger than I thought I was. Now, facing the prospect of palliative care, in my nursing, or with Amber and Jenny, I have lot more strength, and a lot more knowledge.

I never thought I’d get as much out of it as I do. I just love it. I recommend volunteering to everyone I can because I’ve found it to be very personal. The reward of building relationships with people like Jenny and Amber has been amazing.

Thanks to Palliative Care Victoria for helping make this story happen, and to all of our wonderful family volunteers for making such an impact on our families lives.