Monthly Archives: November 2017

Providing expert care at the end of a child’s life

After discovering the devastating news that their one-year-old baby girl Lily wouldn’t have much longer to live, parents Kirsty and Aaron McConnell had to consider where they wanted her to be when she died.

During a time of confusion and stress when nothing seemed to make sense, the McConnell’s turned to Very Special Kids and stayed in our Family Accommodation where Lily peacefully died.

In addition to providing families with respite care, Very Special Kids Hospice also provides medical care at the end of a child’s life, in a home-like environment with support from a dedicated team of nurses and carers. Families can stay in the on-site Family Accommodation either with their child staying nearby in the hospice or in the same accommodation as them.

The support for every family is different, and we work with families to make the last days of their child’s life special in their own way, give advice on planning for what comes next, and offer ongoing support.

After Lily was born her parents noticed she was failing to reach her milestones and something wasn’t right. Kirsty explained “our GP referred us to a paediatrician who ran a series of blood tests. After seeing countless doctors we eventually found out she tested positive to Spinal Muscular Atrophy (SMA) Type 1, the most severe type. That same day, we were also told we probably weren’t ever going to bring her home.”

As the disease progressed, Lily’s muscles became weaker, including her chest. After spending one challenging month in ICU, Lily’s breathing improved and although her condition was still terminal she was able to go home.

The McConnell’s then turned to Very Special Kids after what Kirsty described as ‘a wakeup call’.

“One night at home Lily was struggling to breathe and we had to wait more than two hours for a nurse to come and administer strong medication for her. It was horrible waiting and watching her suffer.

As soon as we came to stay at Very Special Kids, we realised how much better it was. It was a huge relief knowing we had that immediate level of care with nurses next door in the hospice. Having Lily stay with us in Family Accommodation meant we could spend time with her and operate as a family.

The nurses would come and go but we’d still do normal things as if we were at home like cooking and having family and friends visit whenever we wanted. The best thing was it provided security of knowing help was next door.

Our other daughter Eliza was also with us and the nurses would play and engage her in the art and music activities happening in the hospice. We didn’t have to worry about Eliza which meant we were able to spend more time with Lily and make those last few days a lot less stressful.”

When the time came to say goodbye to Lily, Kirsty described the moment as heartbreaking but peaceful.

“It all happened so quickly but she was very calm and comfortable. Very Special Kids allowed us to do whatever we needed. After an hour of holding her, Aaron and I decided to take her to the hospice and place her in the special room.

The next day, we had family visit to say their goodbyes and our Family Support Practitioner Edwina was with us the whole time, supporting the entire family. Edwina also provided information about funeral directors and helped us make decisions when everything seemed foggy.

We didn’t leave Very Special Kids until Lily left. It was comforting to know she was in the next building and we weren’t ready to go until she did. Very Special Kids were so supportive the whole two weeks we stayed, I can’t speak highly enough of the services.

For me, it was so important being able to utilise my time just being a mum instead of worrying about medication – I could leave all of that to the nurses. Because in those final moments that’s what matters and that’s what your child needs you to be, a mum.”

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Family Christmas Fun

Around 400 parents, siblings and children supported by Very Special Kids attended the Family Christmas Party on Sunday 26 November for a day of family fun. While we were concerned the storms would drown us out, they held off long enough to allow all the fun to continue!

Soaring and tumbling on the Aero Bounce proved to be really popular. Two new additions to the day were Bethany Fisher who was a favourite amongst the kids, and a young magician, Lachlan Wilde, who taught the crowd magic tricks. Craft activities, the animal farm, a Liberty Swing, and face painting were super popular too.

The arrival of Santa was highly anticipated and, on a firetruck provided by the Malvern East and Windsor Metropolitan Fire Brigade, certainly didn’t disappoint. Families also had photos with Santa in the ‘Santa Cave’ and family portraits provided to families free of charge by Heartfelt Photography.

The annual Very Special Kids Family Christmas Party enables families of children with life-threatening conditions to come together in a safe and supportive environment.

The Family Christmas Party would not have been possible without the support of 38 of our dedicated team of trained volunteers. Special thanks to the Malvern East and Windsor Metropolitan Fire Brigade and Heartfelt Photography for their ongoing support. A special shout out to Malvern Rotary and Glenferrie Gourmet Meats who provided the staff and product for the sausage sizzle this year, and Bethany Fisher, the children’s entertainer.

Christmas lights brighten up more than just a street

Robert and Leonie have been supporting children’s charity Very Special Kids for over two years by holding an annual Christmas light display at their family home in Beaumaris.

 This year the magnificent display will kick off on Saturday 2 December at 9.00pm. The opening night will include live entertainment with Christmas Carols.

 What once started out as a personal project and one string of lights, grew over an eight year period turning into something much more special and spectacular.

Robert and Leonie’s display began to attract more and more people every year, reaching up to 4,000 visitors last year, causing several traffic jams in their street, that were completely understood by their supportive neighbours!

In 2015, after becoming acquainted with Very Special Kids, they decided to encourage people to donate to view the display. “We went down to have a tour of the hospice, and we decided there wasn’t a better organisation to support” said Leonie.

The Christmas lights started with their love of Christmas, family and bringing people together and Robert believes this aligns with Very Special Kids perfectly, explaining that “thousands of people come to see the lights every year now and people associate Christmas with children so it’s a great opportunity to talk about what Very Special Kids does.”

Robert is also the CEO of DFP Recruitment, and participated in our 24 Hour Treadmill Challenge this year alongside Leonie and his colleagues, raising almost $42,000.

“When we do the lights it’s like our private efforts, but it was nice to be involved in the mainstream fundraising for Very Special Kids too and meet other like-minded supporters. I walked into the treadmill marquee and got tears in my eyes instantly, the atmosphere was truly amazing.

People like to work for companies that show social responsibility, so they got behind Robert, and every person that participated has already committed to be there next year too. We also had several clients come and show their support and they enjoyed being involved in such a worthy cause” said Leonie.

Every year Robert and Leonie hold an opening night where they turn on the lights for the first time, on the first Saturday in December at 9pm. People come from all around the region and are happy to make a donation to support Very Special Kids whilst they are there.

“It creates a great sense of community, which aligns itself with Very Special Kids having such a strong community focus too” said Robert.

“We want to thank the staff that help and support us. It’s not a one way relationship, Very Special Kids are so supportive and gracious, and have really embraced our idea. This is our contribution, involving ourselves with the lights and the 24 Hour Treadmill Challenge. It really does create a wonderful sense of community and it’s a real pleasure for us to be a part of it” said Leonie.

For more information on the amazing light display head to their Facebook page: Rob and Leonie’s Christmas Lights.

Fair and Fashion Sale raise $111,451 for Very Special Kids

The Very Special Kids’ Fair and Fashion Sale were huge successes raising a combined total of $111,451 to support children with life-threatening conditions, and their families.

The Very Special Kids Fashion Sale was held at Malvern Town Hall selling brand new women’s, men’s and children’s clothing donated from various Australian and international brands. Bundles of bargains were snapped up and your generosity helped us to raise an amazing $36,936.

Just a short stroll from the Fashion Sale, we also held a large family Fair at the grounds of Very Special Kids. It was a beautiful, warm day and there was plenty to do and see. Children had the opportunity to meet Dave & Jerry from Despicable Me 3™, Chase & Marshall from Nick Jr.’s PAW patrol, as well as AFL mascots from Hawthorn, Melbourne, Richmond and Sydney. The smells of delicious food wafted around the grounds of Very Special Kids and many left with arms filled with fresh fruit and vegetables, flowers, cakes and toys.

On behalf of Very Special Kids, we wish to thank all of the volunteers who generously gave their time to support both the Fair and Fashion Sale. Your ongoing support helps us to continue to provide vital support to over 900 families across Victoria by providing essential family support services and access to respite and end-of-life care at Very Special Kids Hospice.

We would also like to thank all individuals, businesses and organisations that kindly donated products and services to help support Very Special Kids. The success of these events rely heavily on community support and we couldn’t have done it without you! And finally, a big, big thank you to everyone who attended, your support is very much appreciated.

See Fair photos here.
See Fashion Sale photos here.

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Very Special Kids receives Excellence Award at Volunteering Victoria State Awards

Very Special Kids is the proud recipient of Volunteering Victoria’s 2017 Excellence Award recognising our unique and highly successful volunteering program.

Volunteer Coordinators Lou Cooney and Nathan Brown accepted the Award on behalf of Very Special Kids at Volunteering Victoria’s 2017 State Awards held at Parliament House.

The two, along with the entire organisation, celebrated this achievement and were extremely grateful to be recognised for their efforts in leading what is an incredible volunteer program.

The Excellence Award is awarded once-a-year, to individual managers, leaders of volunteers or a Volunteer Involving Organisation, for demonstrating a commitment to going beyond best practice volunteer management.

Very Special Kids provides a unique volunteering experience in paediatric palliative care, end-of-life care and bereavement support. A potentially daunting area in which to volunteer, but we are committed at every level to going above and beyond to ensure the best volunteer experience possible for our 1,000 plus volunteers.  The Friends Volunteer program also allows volunteers to involve themselves with our fundraising events which vary all the way from Fashion Sales to driving big piggy banks around Victoria.

Lou Cooney, Friends of Very Special Kids Coordinator, has a deep belief that the organisation wouldn’t have been able to succeed without volunteers.

“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.

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

Very Special Kids’ success in implementing The National Standards for Volunteer Involvement was reflected in the results of the most recent annual Volunteer Survey whereby 100% of volunteers indicated that they would recommend Very Special Kids to someone looking to volunteer.

The Volunteering Victoria State Awards showcase the significant and enduring impact Victoria’s leaders of volunteers, volunteering programs and volunteer involving organisations have on building a vibrant and strong volunteering community.

Volunteering Victoria announced six other recipients at the State Awards and we are so happy to have been recognised for something we value so much.

Thank you to all of our volunteers and our Volunteer Coordinators for being the reason behind this incredible award, what an incredible achievement. If you are interested in volunteering please head here.

What’s on at the Fair tomorrow!

There is something for the whole family at this year’s annual Very Special Kids Fair on Saturday 25 November.

Starting at 9am and running until 3pm, children will have the opportunity to meet Dave & Jerry from Despicable Me 3™, and Chase & Marshall from Nick Jr.’s PAW patrol. 

It wouldn’t be the Fair without a visit from our favourite friend from the North Pole. Between 930am and 230pm, children can have a beautiful photo taken with Santa for just $15.

You’ll also see Daisy, the mascot from Melbourne FC as well as some snow princesses. On the main stage there will also be some exciting reptile and science shows.

The Kids Activities Area will be jam-packed with exhilarating activities including bungy trampolines, an animal farm and a fire truck. Children can also have their faces painted, meet our piggy Snout and participate in fun craft activities.

Get your Christmas shopping out of the way at the market selling a range of beautiful homewares, homemade children’s nursery bedding, plants, toys and Christmas decorations. And with a silent auction on the day, you’re sure to find something special.

Those with a sweet tooth will love a visit to the cakes, jams and preserves stall, and those looking to relax will love the garden, fresh flowers and a cafe. Adults can also join in the fun of the lucky dip at the wine lucky-dip and raffle.

With all this excitement, you’re bound to work up a hunger. Find something tasty to eat at one of the many food stands including BBQ and burgers, Greek food, souvlaki, pancakes and Italian food. And when the feet start to tire from all the excitement, the massage booth is the place to be.

With all proceeds going to helping Very Special Kids continue to support families and children with life-threatening conditions, this is one Fair not to be missed!

Very Special Kids Fair details:
Date: Saturday 25 November 2016
Time: 9am-3pm
Location: 321 Glenferrie Road, Malvern

Head to the Facebook event page for the most recent updates.

Main stage
10.00am           Music Therapy
11.00am           Australian Reptile Show
12.00pm           Children’s entertainment
12.30pm           Handball competition
1.00pm             Tricky Nick’s Science Show
1.40pm             Live music – Eight Times Zen

Roving entertainment
10.00am to 1.00pm        Snout piggy mascot
10.30am to 1.30pm        Marshall & Chase from Nick Jr.’s PAW patrol
10.30am to 1.30pm        Mascots from Melbourne Football Club, Hawthorn Hawks, Richmond Tigers and Sydney Swans
11.00am to 2.00pm        Dave & jerry from Despicable Me 3™ meet & greet

Santa Cave & photos
930am to 230pm
$15 with free downloads of your images and a free gift for each child.

On the same day and just a short walk away, Very Special Kids are also holding a Fashion Sale at Malvern Town Hall with top brands slashed to 90% off! Read more here.




A special pair and a very fun Fair

The annual Very Special Kids Fair, held on Saturday 25 November from 9am to 3pm, is the ultimate family day out, that from the outside looks like your regular, fun-filled community event.

To many however, the day and their contribution to the day, means much more.

It has almost been five years since Paul and Helen Brennan lost their very special granddaughter, Holly, who was just three-years-old at the time. Since then, the two have dedicated a large amount of their time and positive spirits to children’s charity, Very Special Kids, who supported the family during the trying time in 2003.

One special way Paul and Helen assist Very Special Kids is by volunteering at the Fair, and whilst they have become involved in many activities, the Fair is particularly special to the two, especially because they attended as guests when Holly was still alive.

Holly was born severely brain damaged, and at just 12-months-old started staying at the Very Special Kids Hospice. Holly’s parents Luke and Prue, were exceptionally grateful that the respite service was available, and that they had the option for Holly to die somewhere like home, that had the medical assistance required.

“She was in for end-of-life care for 10 days and her parents stayed in the amazing family accommodation, it was good because they were able to have a plan when they didn’t feel like they could control anything else” explained Helen.   “The peace and serenity at the hospice made it the perfect setting for a very difficult time” said Paul.

“Volunteering is my way of saying thank you, for the assistance, that the Brennan family were given, in those stressful trying times.”

“The warmth and appreciation that everybody at Very Special Kids shows volunteers, not just us but all, and the way that they are thanked and respected, it’s why people like to come here.”

Kristi Ingrilli, Fundraising Lead for Special Events at Very Special Kids, describes Paul and Helen’s contribution as “nothing short of invaluable. The warmth, generosity and energy they bring to every event and activity is unique and treasured amongst the staff and families that Very Special Kids support.”

This year Paul will be across the road at Malvern Town Hall helping with the Fashion Sale, and Helen will be assisting with the flower stall at the Fair.

Held on the beautiful grounds of Very Special Kids in Malvern, the Fair has a vast array of homemade cakes and preserves, fresh flowers and plants, quality toys and baby goods, as well as craft and home wares that make perfect Christmas gifts. Younger members of the family can also enjoy performances from much-loved children’s characters and activities such as face painting, bungy trampolines, an animal farm and Santa photos.

On the same day, just a short walk across the road at Malvern Town Hall is the Fashion Sale, where thousands of ladies and men’s quality clothing items will be on sale at up to 90% off. It’s the perfect excuse for some retail therapy that won’t empty your wallet.

Very Special Kids helps more than 900 families across Victoria who have a child with a life-threatening condition with ongoing support from diagnosis all the way through to recovery or bereavement.

The free-of-charge family support services include counselling, advocacy, sibling support, bereavement support, networking and peer activities, trained family volunteers and specialist care at the Very Special Kids Hospice.

To find out more information about the Fair head here.
To find out more information about the Fashion Sale head here.

Christmas trees for a cause

Planning on purchasing a Christmas tree this season? We’ve got you sorted!

From Friday 1 December, Malvern Xmas Trees, in partnership with Very Special Kids, will be selling fresh, high quality Christmas trees at our Malvern property with a portion of sales donated to Very Special Kids.

Malvern Xmas Trees was founded by three ambitious young men who are not only passionate about spreading the Christmas cheer but are committed to helping us raise funds to support children with life-threatening conditions.

Trees are available in a range of sizes and are priced from $65. An additional, personalised delivery and pick up service is available on weekends.

Christmas trees will be for sale from Friday 1 December during the following times:

  • Thursdays & Fridays from 10am
  • Saturdays from 7am
  • Sundays from 8am
  • Where: Very Special Kids, 321 Glenferrie Road Malvern

For more information check out Malvern Xmas Trees Facebook page.

Family Service Volunteers extremely valuable

The contribution of Family Service Volunteers is extremely valuable to Very Special Kids and those supported by the organisation, as they work directly with children and families.

Our Family Service Volunteers assist families in four different ways:

  • in the family home
  • when the child is admitted to hospital
  • when the child is at Very Special Kids Hospice
  • by participating in program activities, such as Sibling Days

With the exception of the Geelong and Mornington regions, home volunteers have historically been limited to metropolitan Melbourne. 2017 however, has been an exciting year for Very Special Kids, as the regional offices have started expanding the home volunteer program.

In March this year three new volunteers were trained in Albury-Wodonga and in October over two weekends, five new volunteers undertook the training program in Ballarat. In early 2018 Very Special Kids also looks to run training in Bendigo, with a volunteer information session being run at the Bendigo office on Monday 20 November at 6.30pm.

Pauline at our Bendigo office is excited about having a team of local volunteers not just to provide emotional and practical support to families, but to also hopefully expand program work like Sibling Days.

Families wanting to know more about having a home or hospital volunteer can speak with their Family Support Practitioner or download the Trained Volunteer Program fact sheet.

If you are interested in becoming a trained Family Services Volunteer, please visit our main Volunteering page.

Very Special Kids Golf Day raises $30,000

A generous group of golfers enjoyed a beautiful day out on the green on Tuesday while driving and putting their way to raising $30,000 at the Very Special Kids Golf Day.

Held at Woodlands Golf Club, the day was sponsored by Financial Coaching, Orange and Northern Trust.

The McCredie family originally started the Golf Day as a tribute to their son who passed away only 8 days after his first birthday, and to Very Special Kids who supported them through this time.

All funds raised go to Very Special Kids to help support children with life-threatening conditions, and their families.

A special thank you to our MC dipper, our entertainment Greg Champion, and Very Special dad, Jamie Padfield, for sharing his story with us. Thank you also to Lion, Asahi and bubblesoccer2u for contributing to the success of the day.

Congratulations to all golf winners too – Darren Seccull, Mark Seccull, Phil Benton, and Simon Johnston.