Monthly Archives: April 2017

A top fundraiser – OHM’s Scott Goodwin

Scott Goodwin, Director at OHM Chartered Accountants, has been supporting Very Special Kids for years by running their annual OHM Golf Day, raising amazing funds. This year Scott has taken it up a notch further and will be participating in the 24 Hour Treadmill Challenge with his team from OHM, and he is one amazing captain! So far OHM’s fundraising efforts have been incredibly successful, so we decided to ask him a few questions:

Can you share some of your fundraising tips with us?

We try to cover various communication channels through e-mails, LinkedIn and Facebook to advertise the event. We have a team from the office participating and everyone has individualised their profile on ‘Everyday Hero’ to help personalise the event to their network. We have great relationships with our clients and professional partners which widens our available network and they have been great supporters of our efforts with Very Special Kids. Lastly some staff members are advertising through their e-mail signatures and OHM as a business are also ‘matching the first $200 of donations’ each team member receives.

This is your first year participating in the 24 Hour Treadmill Challenge, what are you/your team most excited about?

We are a firm of accountants so we are pretty excited to get out of the office, get some fresh air and a bit of exercise! It is also a great opportunity to be part of a fun community event and bond as a team.

What advice do you have for other treadmill participants trying to raise funds?

It is a marathon not a sprint! Try to advertise to your network regularly and don’t burn out in the first week. Make sure you provide plenty of details about the amazing work Very Special Kids does to encourage donations. Most importantly don’t be afraid to ask the question- if you don’t ask you won’t receive. Lastly don’t forget to thank people for their donations.

We’re so grateful to have the support of a great man and company, we can’t wait to see what they achieve by the end!

Once Upon A Time the Very Special Kids Hospice was transformed into a Fairy-tale

Recently from the start of April we had our School Holiday Program, themed Once Upon A Time. Thanks to Svetlana from The Art Cabriolet as well as our incredible hospice staff, it truly was a magical time.

Over the two weeks the Hospice was transformed, into a fairy-tale like wonderland. The kids staying at the time, were taken into a world of creativity and imagination. There was no time for boredom, as each day was filled with exciting activities, epic adventures and a whole lot of laughter.

Drama Toolbox came along and entertained the children with a dynamic fairy-tale fiasco and a miniature pony that was super talented (and cute!). They also went on a treasure quest with pirates in a 4D storytelling setting, and joined mad hatter for an epic tea party.

As always they were able to participate in Dancing on the Art with a large group all making their mark, and they even created some unusual art, with bubbles and shaving cream.

The kids then got to head out on a scavenger hunt that ended with some storytelling at Malvern library. Along the way they met local business owners and collected some treats to bring back to the hospice.

When it got too much there was the magical wizard reading room where they could sit and relax by the fireplace… lit by fairy lights of course.

Thank you again to Svetlana for making the School Holiday Program an amazing interactive and creative experience.

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.

The brightest star in the sky

Six years ago, in 2011, Tamara and Jamie Padfield lost their beautiful eight-year-old daughter, Charlotte, a very special kid.

In her earliest years, Charlotte was un-diagnosed with a rare genetic disorder, and it was so uncommon it had not even been named yet.

She required 24-hour care and was very susceptible to getting other illnesses, her mother Tamara used to nap in just 3-hour-cycles just to be able to provide the care she needed.

Charlotte did however stay at the hospice around 3 times a year for a week at a time, offering her family some time for respite.

Since Charlotte’s passing, the Padfields have still utilised the services offered at Very Special Kids, especially Charlotte’s younger siblings, Emma, 11, and Isabel, 8 and more recently Jack, 2.

The two beautiful, healthy little girls attend our bereaved sibling days and “Emma said she finds the days help make her more confident, as she’s a little on the shy side.

The sibling days are great for their self-development and also as a coping mechanism, finding a balance between having fun and remembering their sister, Charlotte” said Jamie.

Jamie and Tamara see a lot of benefit in the days for their daughters, and they are nothing but thankful, as they love for the girls to be able to rejoice in Charlottes memory.

“The girls are happy, they still talk about Charlotte regularly. Whenever we are outside at night they look up and find the brightest star in the sky at night and say ‘that’s Charlotte’, they always still include her, because she is still a part of the family” said Jamie.

Whilst the parents no longer utilise all services, in the last 6 years they have still attended Christmas parties, Lord Somers camp, and kept in touch with their Family Support Worker and the home volunteer they had for Charlotte, Moira.

Jamie feels passionately about being able to give back to Very Special Kids and has tried to stay involved as possible, including attending our Golf Day last year to talk to supporters about the services we offer.

“What Very Special Kids did for us was amazing and it kept us from spiralling downwards” he said.

His sister, Neroli, does a lot of her own fundraising and will be running with her daughter in the 24 Hour Treadmill Challenge this year, and he looks forward to attending to show support.

To help support families like the Padfield’s, support a runner at the 24 Hour Treadmill challenge by following this link: http://www.vsktreadmill.org.au/.

Bereaved Siblings Buddy Up

This Thursday, we held a Bereaved Sibling Day here at Very Special Kids, as part of our Sibling Support Program for children with a brother or sister who has died.

Not only did the sun come out making it a beautiful day, so did all of their smiles, with many children bonding and feeling comfortable to express themselves both verbally and creatively.

There were plenty of arts and crafts, including creating coloured sand jars, pet rocks and paintings, with each activity tailored to suit the day. They also got to put their thinking caps on and do fun trivia quizzes with a wizard.

At lunch they all enjoyed Crust pizza and a delicious cake from Cake Angels, and got to hang out on the playground in the hospice, reminiscing and forming friendships that will last.

In the afternoon they enjoyed a relay race, and an awesome game of parachute, inspiring their sense of working together and belonging.

They also got the chance to display their art to the group, explaining why they made it the way that they did, building on their confidence to express themselves.

Our Bereaved Sibling Days have a therapeutic framework designed to allow children to not only explore their emotions, but also enhance self-esteem, encourage peer support and reduce the sense of isolation.

Children have the opportunity to come together, connect, and meet others who might be in a similar situations in a caring and safe environment.

To find out when the next Bereaved Sibling Day is on, contact Meg Chin on 9804 6222 or mchin@vsk.org.au

Icon Group’s Andrew Wells – An expert fundraiser

This will be Andrew Wells fifth year participating in the 24 Hour Treadmill Challenge with his colleagues from The Icon Group, and over the past few years his incredible efforts have not gone unnoticed. We decided to ask him some questions and find out how he does it:

Can you share some of your fundraising tips with us?

Make sure you ask people and that they understand why you are asking. We are all inundated at times with requests for good charitable causes but if people can see you’re passionate about a cause they will donate. Personally I focus my fundraising requests to family, friends and business colleagues on one major cause like the 24 Hour Treadmill Challenge and really concentrate my time and effort to raise money. Making it personal always helps too- we have connections with some families from Very Special Kids so we aim to share their amazing stories.

This is your fifth year participating in the 24 Hour Treadmill Challenge, what are you/your team most excited about?

The Icon Group team are a pretty energetic group of people but the treadmill challenge has such a great vibe that it tends to lift that energy to another level – even at 4am in the morning! What really excites us though is the amount of money that such a dedicated community of 32 teams can raise in a 24 hour period and the effect the event has on the kids in the hospice – both seeing their faces on the day and knowing that for the following year Very Special Kids will have the funds to continue the personalised level of care.

What advice do you have for other treadmill participants trying to raise funds?

Use your contacts to your advantage. Some will donate money but also look for suppliers etc. who will donate products or services in kind that you can then use to raise money through raffles and the like. For example, The Icon Group cancer care and pharmacy sites run gold coin donation morning teas. I’d also say that every cent counts so encourage people to donate what they can.

Andrew is the perfect example of a dedicated participant, “having a team captain who is so passionate about the cause helps a lot. The staff want to get involved if the boss is willing to put himself out there! He is there for almost the entire 24 hours and his enthusiasm is contagious (and his love for dressing up)!” said his colleague, Debbie Reid, this year’s team captain of Icon Group.

Siblings spend special time together

Last Thursday we had our first Sibling Day of the year and it was almost too much fun, there was a lot of colour, a lot of laughter and a lot of positivity. Thanks to the Family Support Team, other staff and volunteers, the days are always a success.

17 children living with an unwell sister or brother, met at Very Special Kids and spent the day together, engaging in activities that are designed to enhance self-esteem, encourage peer support and reduce any sense of isolation.

Arts and crafts were definitely at the centre of the day, and when the children were asked to present their pieces to the group and explain what they were about, they were nothing but proud and happy to share.

Whilst they certainly enjoyed all of the creative aspects of the day, the highlights were definitely the relay run on our front lawn and then the parachute game too. The games showed the relationships formed and how well everyone was working together.

Sibling days are a great way for the children to meet other siblings in a caring and safe environment, and have company from others who might be experiencing similar emotions.

To find out more information about the services we offer to families, please call the Duty Worker on (03) 9804 6222 or download the Sibling Support Program fact sheet.

Who needs an Easter Bunny when you’ve got Armadale Primary School?

Last Friday on March 31, four students in grade six came down to Very Special Kids from Armadale Primary School.

School captains Lucia Tabbagh and Jack Gatehouse, and Vice captains Maya Hurwitz and Quinn Sutter, brought 13 Easter hampers donated to Very Special Kids families and children by the school’s annual Easter Raffle.

The primary school have done this several times before, and we appreciate their continued contribution.

The hampers were not only huge, but decorated with student’s drawings and creative additions, instantly bringing so much more colour and excitement into the hospice.

The four students brought their mothers along, and toured the hospice and even met some of the kids we support.

It was great to see such young people involved, and now they are even wanting to support Very Special Kids further, and are looking into being a part of the 24 Hour Treadmill Challenge, in some way.

It is fantastic to feel support from the local community and especially a local public school, thank you to the students and teachers who made this happen, but also to the school as a whole for the hampers. We are sure they will be thoroughly enjoyed!

Open Garden Family Day

Last Sunday on April 2, an open garden family day was generously hosted by the MG Car Club and George and Pat Hetrel, the owners of Como Gardens, at the base of the Dandenong ranges.

It was a great fun filled day, and the families thoroughly enjoyed the vast grounds, miniature train rides and incredible collection of classic cars.

There were a lot of activities for the children including sand art, a balloon animal entertainer, walks in the fairy garden, visits to the Hobbit house and even a jumping castle.

“This day for Very Special Kid’s families hosted by MG car club is the highlight of the year” said George Hetrel.

The resounding highlight was definitely the miniature train, it is always extremely popular, and more than one child reported it being what they loved most about the day.

It was an exceptionally peaceful and calm atmosphere with families enjoying the opportunity to have a picnic together and the beauty of gardens surrounding them.

One parent, when asked what makes the day most enjoyable for them stated “the food, the train, the company and the lovely MG car club volunteers and Very Special Kids staff who made me feel so very welcome.”

To keep up with more events for Very Special Kids click here.

Running for Sebastian and Charlie

Danielle and Richard Burnet will be competing in the 24 Hour Treadmill Challenge this year yet again, with their team filled with friends, family and colleagues. The team is dedicated to Sebastian and Charlie, their eldest sons.

Sebastian, now 10, was diagnosed with an extremely rare genetic condition called Multiple Sulphatase Deficiency, right before his second birthday.

“The disease only affects one in 1.4 million kids. So to say that we were shocked beyond belief is an understatement.” Said Richard.

Already struggling to believe the information, Danielle and Richard then found out that Charlie, his younger brother whom is now 8, also has the disease.

At first they were told it would be unlikely the boys would live beyond the age of five, with the potential of suffering symptoms of the condition like developmental delays at around 18 months, extending to muscle wasting, progressive loss of vision leading to blindness, paralysis and then dementia.

Now Charlie and Sebastian are unable to eat themselves, walk or talk, they are in wheelchairs, and they are constantly taking medication.

Danielle and Richard do have two healthy younger children, Taylor 5 and Christian 2, and despite their brother’s inability to fully communicate, Christian and Charlie have a very strong connection.

“Both young ones are growing up to be very loving children, as they are surrounded by differences, learning to care and be more aware from such a young age” explained Danielle.

Sebastian and Charlie are regular visitors of the hospice and Danielle feels very grateful that the service is there for them to utilise. She is also very grateful for her Family Support Worker Jess.

“I love her, she’s my life line, and she understands me and my family situation. She supports me and the challenges, she gives me clarity” said Danielle.

In 2016, like previous years, Danielle and Richard participated in the 24 Hour Treadmill Challenge. Only this time, they began Team Seb and Charlie, which was made up of mainly friends and family, raising almost $28,000.

Danielle is very passionate about the event and loves getting people on board.

“This is a great way for us to get our family, friends and colleagues involved with what our family experiences. The event is so positive and unique, I have never seen one so different and quirky, it generates nothing but good feelings and everyone loves to get involved” she said.

“Before we were told of Sebastian’s and then Charlie’s diagnosis, we had very few cares in the world, like most other people. Then all of a sudden you’re hit with this bombshell and it changes your perspective on everything.”

To show your support for families like the Burnets you can sponsor a runner by clicking here.