Monthly Archives: October 2015

The Mummy Confidentials and Very Special Kids

Very Special Kids is thrilled to have the support of our Fashion Sale Ambassador Jess Dempsey. Jess is a fashion and lifestyle blogger, known for her fashion blog What Would Karl Do, and a mum of two boys. Another of her blogs,The Mummy Confidentials, is shared with her aunty Helen Ceravolo and chronicles both their lives as mums in Melbourne. Below Jess and Helen share why they support the Very Special Kids Fashion Sale.Originally published at The Mummy Confidentials.

As parents there are so many reasons that we worry for our children but the biggest worry is when our children are sick. Sometimes, when I hear my kids cough at night I say a little prayer that it’s not anything serious. My anxiety heightens and I get up to check the expiry on the Panadol. Pfft, I am so bloody lucky, my kids are generally very healthy. But imagine your child had a life-threatening condition? Actually, I don’t want to imagine but it’s a reality for many families. Very Special Kids is a children’s charity that supports children with life-threatening conditions and provides support to their families.

This year is the 30th Anniversary of Very Special Kids and The Mummy Confidentials is pleased to promote this wonderful charity and promote its wonderful services which include free-of-charge family support such as counselling, sibling support, bereavement support, networking and peer activities, trained family volunteers and more.

So how did this wonderful organisation come to be? Thirty years ago two families founded Very Special Kids after both losing children to leukaemia. After seeing other families going through similar experiences, they found a great need for more support. Now, there are 900 families who are supported and this is growing.

How can you show your support? That’s easy. Very Special Kids present their shopping spree at the Malvern Town Hall where 100% of the proceeds go to this charity. If you love a bargain (who doesn’t right?) then this is right up your alley. There will be some gorgeous fashion and this year some children’s clothing from Caprice Clothing, as you can see modelled in our photos, including those very cool licensed tees. The Fashion Sale is Friday 13th November 2015 5pm – 10pm . All clothing, jewellery and accessories are donated by Australian and European brands at up to 90% off the retail price. Entry is by gold coin donation. We really hope to see you there.

 

Under the sea at the hospice

Children staying at Very Special Kids Hospice were submerged in fun under the sea activities during the recent school holidays.

A visit from Roaming Reptiles saw the kids get up close and personal with some aquatic reptilian friends including frogs, turtles and crocodiles and the children embarked on a journey to the Melbourne Aquarium to see the incredible sea-life living there.

Art therapy took on a nautical theme, with hand-prints and footprints transformed into sea creature canvases and sand and shell jars created. A fitting gift for mum and dad at home.

The children also got creative in the kitchen making crab cookies and a jellyfish tank with blue jelly and fish lollies.

The Under the Sea school holiday program was made possible through the generous support of volunteers, The Art Cabriolet, Roaming Reptiles, SEA LIFE Melbourne Aquarium and Coach Buses.

 

 

 

Piggy Bank Appeal brings home the bacon

A huge $1,043,788 has been raised in the 2015 Piggy Bank Appeal to help more than 900 Victorian families caring for children with life-threatening conditions.

Five giant piggy banks travelled 6,958 kilometres across Victoria collecting donations, with the support of 271 volunteers, 88 ALH Group venues, 283 Commonwealth Banks and numerous other businesses and organisations.

Very Special Kids CEO Sarah Hosking says the funds raised will enable Very Special Kids to continue its important work.

“We are extremely grateful for the generous support of our corporate partners, our volunteers, and the Victorian community, for enabling us to care for more than 900 families across the state.

“While the future is uncertain for many of these families and their children, one thing they can rely on is that Very Special Kids will be there to offer respite and end-of-life care through the hospice and practical and emotional support through our Family Support Services and Family Service Volunteers, and all free-of-charge.

“It costs $7million per year to operate Very Special Kids. Thank you for helping us give these families that certainty,” said Sarah.

On Tuesday night a finale event for the 2015 Piggy Bank Appeal, recognised the businesses, community groups and individuals that worked tirelessly throughout the month of September to raise funds for Very Special Kids, including major partners Seven News Melbourne, Commonwealth Bank and ALH Group. Awards were presented to those who went the extra mile.

Piggy Bank Appeal Awards

Supporting Partner and Media Awards

  • ADVENT PRINT MEDIA provided the Piggy Bank Appeal with a variety of printing solutions including posters, newsletters, banners and merchandise boxes
  • WTFN ENTERTAINMENT filmed and produced our television commercial for Channel Seven and the Scott family videos. They are experts in producing television content
  • MAKE IT HAPPEN is the creative and design team that bring our Piggy Bank Appeal images and messages to life
  • SMOOTH FM 91.5 helped ensure a successful Piggy Bank Appeal with community service announcements, radio mentions and website promotions
  • TOYOTA has again provided five vehicles for this year’s Piggy Bank Appeal. You will have seen our giant piggy banks cruising around town. They have travelled across Victoria on the back of Toyota Klugers
  • LEADER COMMUNITY NEWSPAPERS receive a Community Award who spreading the word by publishing family stories and photos to publicise our fundraising events and activities.

Major Partner Awards

  • COMMONWEALTH BANK branches throughout Victoria accept donations from their local communities and also stage fantastic events that raise significant funds for the Piggy Bank Appeal
  • SEVEN NEWS have supported the Piggy Bank Appeal since its inception. Without this important media support we would not be able to spread our message to the people of Victoria. We thank Peter Mitchell for being our Piggy Bank Appeal Ambassador again this year
  • ALH GROUP supports the Piggy Bank Appeal by fundraising in its 88 venues across Victoria and also made a major contribution by getting right into the spirit of the Piggy Trails

ALH Group Awards

  • Recognition Award for Category A – MORWELL HOTEL, who raised $5,321
  • Highest Fundraiser for Category A – BLUE BELL HOTEL, who raised $6,080
  • Recognition Award for Category B – OLINDA CREEK HOTEL, who raised $11,001
  • Highest Fundraiser for Category B – BURVALE HOTEL, who raised $12,258
  • Recognition Award for Category C – SEAFORD HOTEL, who raised $15,040
  • Highest Fundraiser for Category C – SKYWAYS HOTEL, who raised $20,121
  • Overall Highest Fundraising Venue for the ALH Group – SKYWAYS HOTEL, who raised $20,121

Commonwealth Bank Awards

  • Branch recognition award – ROSEBUD, who raised $2,251
  • 3rd Highest Fundraising Branch – TRARALGON, who raised $2,521
  • 2nd Highest Fundraising Branch –MORNINGTON, who raised $5,370
  • Highest Fundraising Branch –CASTLEMAINE, who raised $7,384
  • Overall Highest Fundraising Branch –CASTLEMAINE, who raised $7,384

Lotto Outlet Awards

Tatts Lotto outlets have supported the Piggy Bank Appeal since its inception.

  • 3rd Highest Fundraising Lotto – BP PRAHRAN, who raised $3,170
  • 2nd Highest Fundraising Lotto – CLIFTON HILL LOTTO, who raised $8,076
  • Highest Fundraising Lotto – INVERLOCH LOTTO, who raised $8,128

Community Supporter Awards

  • Recognition Award Community Supporter – HEALESVILLE RSL, who raised $10,563
  • 3rd Highest Community Supporter – KEILOR EAST RSL, who raised $11,820
  • 2nd Highest Community Supporter – PANTRY BRIGHTON, who raised $17,459
  • Highest Community Supporter – WESTEND MARKET HOTEL, who raised $17,898

Volunteer Awards

  • Rising Star Award – RENEE GARNER & DAVID SZELECZKY
    Renee & David came on board as volunteers for the 2015 Piggy Bank Appeal with gusto! In only a couple of months they have learnt to tow the pigs, spread the piggy spirit around Prahran Market  and Bourke Street Mall, and even took on their first regional trail around the South West of Victoria. Corporate high flyers during the week, they successfully become pig suit and feather boa wearing fundraising superstars on weekends!
  • Volunteer Recognition Award – SUE SERRA
    In the eight years Sue has volunteered she has travelled more than 6000km (almost halfway to Rome), eaten over 66kg of sausages cooked by local Rotary members, sold 12,000 items of merchandise, sprayed her hair pink 10 times, visited 82 CBAs and 22 ALH venues, shaved five person’s heads, visited four pig farms selling pig poo and helped raised more than $100,000.

Meet the Scott family

The Scott family is the face of this year’s Piggy Bank Appeal and they represent more than 900 families across Victoria who are supported by Very Special Kids. Mum Robyn Scott shares their story.

I still remember that first day Kyan was finally discharged from hospital after eight long weeks. As I put him in the car, he started having another seizure.

I just remember thinking “Why is the hospital sending us home? He’s not fixed”. He wasn’t the same child I arrived in emergency with. He no longer smiled, or rolled or even recognised me. It was heartbreaking and I felt so alone and unsupported. It was such a shock; my life had taken such a turn.

Everyone has certain dreams of what they want to do in life. Whether that is to have a successful career, to travel, to have kids. When that dream comes true, you feel blessed and so unbelievably happy that you almost feel invincible.

To then have it all change in the blink of an eye is something that will stay with you forever.
My husband Matthew and I had just that. We had a beautiful baby boy Kyan. Our first born. Who we had created this bond with and we were loving every minute of it.

Little did we know that was all about to change.
Kyan was four months old when he had his first seizure.

We were on a family holiday on the Gold Coast. We had to take him to the hospital because we had no idea what was wrong with our little boy. He was in and out of hospital for months while doctors struggled to get his seizures under control.

We soon found out what was affecting him. I’ll never forget the look of horror on the nurses’ faces when they were looking at the screen at Kyan’s test results. Kyan had two brain abnormalities which had resulted in cerebral palsy and epilepsy.

We had lost our little boy. He no longer recognised us. We were scared. We had no idea what our little boy was going to be able to do. He was just like a newborn again.

Kyan is now nine years old. He’s not your typical nine year old. He’s in nappies. He needs us to feed him. He needs us to bath him. He needs us for everything. He can’t kick the footy with his dad. Or run around and play with his younger brother Hayden and twin sisters Maddison and Eloise. But he does give Matthew and I the best smiles and loving hugs. When Kyan is upset, his brother Hayden brings him his favourite toy, or his two twin sisters mother and nurture him.

These little things are what makes me so proud of my family.

After Kyan’s initial diagnosis, the thought of having another child was unimaginable. Kyan’s condition is genetic so we were worried that if we had another child they might have the same condition. We eventually decided we would have more children and I am so happy we did. As our family grew, one of the most positive things for me is that the kids don’t know Kyan any other way. To them, Kyan is their older brother, they accept him for who he is.

I love the people my children have become because of Kyan.

We are a lot stronger and a lot happier. Our strength is also thanks to Very Special Kids. They give us an extra layer of support that we wouldn’t have otherwise.

When Kyan stays at Very Special Kids Hospice it allows Matthew and I to have a break when we need it and spend quality time with our other children. It’s comforting to know we don’t have to worry about Kyan. We know that he is in good hands when he stays at the Hospice.

He loves it there. So do Hayden, Maddison and Eloise. They have even re-named the hospice to “The Piggy House”. It makes me so happy to see Kyan’s face light up when we take him to the Hospice. One of his favourite rooms is the Multi-Sensory room, which I now have to try to replicate in our house he loves it so much.

Kyan’s prognosis has a big question mark above it. We don’t know what his future holds. We can only hope for a happy and healthy life for him.

We have recently put in a vagal nerve stimulator which is helping with the severity of the seizures. It will never control them, but we hope it can get them to a level where they are not impacting his heart and his breathing. Sometimes his seizures are so bad that if he has them during the night I am too scared to go into his room in the morning. I wait outside his door to hear a noise from him to know he is ok.

Our concerns for Kyan as he gets older are his height and weight. As he grows, day-to-day activities such as bathing him, changing his nappy, getting him in and out of the car will become harder. We are currently in the process of building a wheelchair friendly home to suit Kyan’s needs. We will continue to care for Kyan in our home as long as we possibly can. Having Very Special Kids for support will definitely make it a whole lot easier.

Other families can turn to their family members for support. It’s just not as easy for us to do that with Kyan. It’s a big ask, and we don’t feel comfortable doing it. But we are lucky we have Very Special Kids. We know that they are always there for us when we need them. Having that extra support network is invaluable, and we are so grateful we have access to it.

Telling you my story has brought up mixed emotions for me. I forgot the pain that we felt when Kyan had his first seizure, when we found out about his condition, when we first realised we had lost the little boy that we had created a bond with.

It’s humbling to know there are people out there that support Very Special Kids. You might not know every family’s story but you now know mine. And there’s a place that looks after families like ours.

On behalf of all the Very Special Kids families, I thank you for supporting and believing in this amazing organisation.

My first Sibling Day

Eleven-year-old Shaine Body tells us about his first Sibling Day

My first sibling day was amazing! The theme was ‘My Headquarters’. When I got off the bus I wasn’t sure what to think of Very Special Kids. However my feeling of uncertainty went out the window as soon as I got first glance of the building. I felt very comfortable and when I arrived almost every adult there was saying hello to me.

After making a bag and door handle we went into another room. In that room we learnt about all the rules for the day and split up into our groups. The different groups were all based on different emotions and I was in group ‘Sad’.

The first activity we did was going to different islands. The first island my group went to was ‘Goof Ball Island’ where we made ‘spiders’ (lemonade with ice cream) then had a go at the ‘Big Splash’ ( like a dunking machine) where we had to throw a ball and hit a lever which would push a bucket of water on a very unlucky person!

Then we went to ‘Memory Island’ where we stood in a circle and threw a ball to each other, the person catching the ball would share a memory they had.

Then we to ‘Family Island’ where we talked about different experiences with different family members, then ‘Friendship Island’ where we wrote our friends names in a circle of who do we see the most, then who do we see less often etc. We got to play dress ups also!

Then we went to ‘Mystery Island’ where we got a sheet of paper that had questions and a tick box next to each question. We had to find the answer to each question in a treasure hunt then claimed the completed sheet for a prize!

Then we had pizza for lunch!

After lunch we did some therapeutic activities including making a little book of feelings and a memory ball where we wrote and / or drew a memory on a piece of paper and put it in a ball with decorations. Once we were done it was time to go!

Bendigo cyclists tackle Tasmania to help Very Special Kids

A team of 22 Bendigo cyclists are taking the challenge of cycling around Tasmania from Saturday 20 to Friday 26 February 2016, to raise more than $50,000 for Very Special Kids.

They will cover 815 kilometres and climb over 12,000 metres during the seven days of cycling.

Very Special Kids currently supports 27 families in the Greater Bendigo community, by providing 24-hour nursing care at Very Special Kids Hospice and access to family support services through the Ballarat office.

It is hoped that with the funds raised Very Special Kids will be one step closer to opening an office in Bendigo, which would cost upwards of $100,000 to operate annually.

Stephen Iser, a member of the cycling group, said they are looking forward to contributing to their community through the Tasmania ride.

“We have chosen to raise funds for Very Special Kids to try and make a difference to the Bendigo families supported by the organisation.

“These families face many challenges and are not able to enjoy many of things us in the cycling group take for granted,” he said.

The Watson family from Bendigo is one of the families that will benefit from the group’s fundraising efforts. Seven-year-old William Watson and five-year-old Hamish Watson 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 Watson 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 turned to Very Special Kids for respite care at Very Special Kids Hospice, enabling Natalie and dad Brian Watson a break from their caring duties when needed, and counselling through their Family Support Worker.

Donations to the Bendigo Tour of Tasmania riders can be made at bendigotot.org.

Subzero and friends make a very special visit

The children at Very Special Kids Hospice received a very special visit from Melbourne Cup hero Subzero, to celebrate the 2015 Spring Racing Carnival Premierships and the team of trainers and jockeys that will be racing to raise money for Very Special Kids.

Subzero and handler Graham Salisbury got up close and personal with the children, with the gentle horse nuzzling into the children’s faces much to the delight of everyone there.

Trainers Wayne Hawkes and Lee Freedman and jockey Daniel Moor were also there to meet the children. The trio are part of the trainer and jockey team supporting Very Special Kids this Spring Racing Carnival. Others include jockeys Tommy Berry, Brenton Avdulla and James Winks and trainers James Cummings, Joe Pride, John O’Shea and John Sargent.

While competing for group titles and prize money at the 12 premier racedays, the jockeys and trainers will also be competing to win donations for Very Special Kids, with a pool of $80,000 up for grabs.