Monthly Archives: December 2016

Gathering to remember

More than 100 people gathered at the Ballarat New Cemetery in December to remember special children who have died.

During the special Ceremony of Remembrance, representatives from Ballarat’s support services read poems about the loss of a child.

Balloons marked with messages to loved ones were then released into the sky as musicians played a beautiful rendition of ‘Somewhere Over The Rainbow.’

“It was all very moving” said a bereaved parent supported by Very Special Kids, “you don’t feel so alone when you see so many other families here too.”

Organised by the Ballarat Bereavement Support Network, The Ceremony of Remembrance was presented by Very Special Kids in conjunction with St John of God Hospital, Ballarat Health Services, Ballarat Hospice Care, SANDS, Leukemia Foundation, The Compassionate Friends, Cops’n’Kids, Red Nose and Grief and Loss.

The Ceremony of Remembrance will be held again next year on Monday, December 18 at the Ballarat New Cemetery.

A very special holiday for the Chignells

Going on a holiday is considered fairly normal for most families over the summer break. However, it’s not as simple as it sounds for families who have a special needs child.

Parents Sarah and Stuart live in Bendigo with their five children; Eadweard, Morag, Arlen, Aengus and Annaliese; and it’s very rare that they go on a holiday with the whole family.

Their eldest son Eadweard is 9-years-old and suffers from an undiagnosable neurological condition. Because of his condition, Eadweard is non-verbal, is fed through a PEG tube, has uncontrollable seizures and requires assistance with all his daily needs.

Eadweard comes to stay at Very Special Kids Hospice where he receives 24 hour specialised nursing care, and it gives his parents much-needed respite.

Recently, the whole family came to stay at the onsite accommodation located just behind the Hospice; allowing them to be close to Eadweard during his stay, and they could also spend quality time together as a family.

“We found it really special that we could have all the kids together whilst Eadweard stayed in the hospice” said his mother, Sarah.

“It was a true family holiday because we weren’t constantly working around Eadweard’s medical needs, but instead the nurses did such an amazing job of caring for him and it meant Stuart and I could take a break and enjoy our family time together.

I also found it really nice to be an active participant in the family activities, rather than taking on the role of a carer.”

Sarah said another highlight of staying at the onsite family accommodation was that their other children could join in on all the hospice programs and activities with their older brother.

“We had an amazing art therapy session one of the days. It was really special to do an activity like that as a family, and the art therapist was so amazing at including everyone.”

Eadweard’s younger brother Aengus agreed, “I liked doing the art with Eadweard because we don’t normally do stuff like that together”

Thanks to Chain Reaction Challenge Foundation for funding the Very Special Kids family accommodation renovation and enabling more comfortable stays for families.

Find out more information on Very Special Kids onsite family accommodation here.

Supporting the Mullan family through The Amazing Ride

When Belinda and Craig Mullans’ first child was born, they had a picture in their mind about what life would be like with their baby boy. However, it didn’t turn out as planned.

“My first Mother’s Day was not at all like I expected it would be. Jack was only three weeks old and he was still in intensive care. We were unsure about whether he was going to make it,” Belinda said.

“He had a brain haemorrhage while in-utero and his brain fluid was not circulating the way it should have been, which meant his head circumference was getting bigger and bigger. He needed surgery to have a shunt placed in his brain to improve the flow of fluid.”

Now 11 years old, Jack has cerebral palsy, epilepsy and requires a wheelchair for mobility. He also has a visual impairment that causes him difficulties in being able to see people and associate places.

While the family are thankful that Jack is now doing well, he still has a life-threatening condition and his medical complications put significant pressure on the family.

The respite care provided by Very Special Kids Hospice has allowed Jack to enjoy several stays while Belinda, Craig and their second child Lucy take a much-needed break.

Belinda said she feels confident that Jack is in the very best of care.

“The second time Jack stayed, we took the big step of going interstate for the weekend to Tasmania to watch the football with another couple. We slept in and had some respite, it was just fantastic. We hadn’t done that for eight years,” she said.

“Because Jack requires 24 hour care, it means doing everyday family activities like bike riding is always a challenge” said Belinda, “We often have to do things separately or not at all, but we acknowledge our family is different and we make the best out of what we can.”

The Mullan family are just one of the 900 Victorian families that Very Special Kids supports. By providing free of charge care for these children and families, Very Special Kids relies heavily on the support and generosity of the community.

How you can help support

Very Special Kids are the official charity partner for The Amazing Ride, a family cycling adventure taking place on Sunday 12 February. All funds raised will go towards helping support families like the Mullan’s.

“I love that Cycling Victoria are supporting Very Special Kids” says Belinda. “It’s a great opportunity to value special needs kids within the community, and their families, whilst also raising funds for an important cause.”

The Amazing Ride lets you explore the bike paths of Melbourne in a fun, safe and family friendly way. With three rides to suit all ages and abilities, the Amazing Ride will be a fun day out for the whole family. Stopping at iconic Melbourne sites like the Collingwood Children’s Farm and passing hidden gems and beautiful playgrounds, the 1km Baby Chino Ride, the 14km Milkshake Ride or 32km Latte Lap each have something to make the whole family smile.

Register now!

Jumping castle fun at Very Special Kids

It was a whirlwind of jumping, sliding, bouncing and dancing at the Very Special Kids Mates on the Move weekend.

The children kicked off the weekend with a giant jumping castle on the lawn at Very Special Kids. It was fair to say everyone loved bouncing around and sliding down the big slippery slide, there was even a basketball hoop!

The jumping castle was definitely a hit, as all four children involved kept saying ‘jumping castle, jumping castle’ anytime they weren’t on it throughout the weekend.

The children were also surprised with a visit from Code Dance Group who put on a spectacular performance in the hospice. The children loved bopping around to the music and watching the colourful routine.

This weekend was made possible by the generous support of volunteers, Playcity Jumping Castles, Code Dance Group and a very special thank you to Upstream Foundation for funding the Very Special Kids Mates Weekends program.

Mates on the Move brings together children who are very mobile and have high behavioural needs requiring one-to-one care. The program enables these children to experience activities they normally would not be able to participate in.

“I ran 226km for Very Special Kids”

What started as a crazy idea has turned into a phenomenal achievement for Abraham Booker.

“I had this crazy idea to run around the bay” he said. When asked whether he’s ever ran the distance before, he said “no” but with determination and passion Abraham decided to take on the challenge.

He called upon other runners to join him, started intense training and planning for the 220km ultramarathon from Point Lonsdale lighthouse to Fort Nepean on the 11-13 November.

He also set up a fundraising page to encourage support and donations. “I’m inspired by the work of Very Special Kids and wanted to support them by raising money and awareness as part of my participation in the run.”

When race day came, Abraham was nervous but still smiling. Throughout the trek, he encountered many challenges far from anything he’d imagined but then he remembered why he was doing it in the first place and said “thoughts on Very Special Kids brought me back smiling.”

Over 34 hours, 28,500 calories burnt, 226 kilometres and 5 chocolate Up & Go’s later, Abraham made it to Fort Nepean.

“This was always a dream put into a column near impossible. Now I have conquered my impossible.”

Abraham also exceeded his fundraising goal and raised an incredible $2,628.75 for Very Special Kids to support children in 24 hour care.

On behalf of our children’s charity, we wish to congratulate Abraham on his inspiring achievements and say thank you for the support.

Supporting Cody and his family through tough times

When Ami Hodgkinson’s first child was born, nothing could prepare her for the challenges that lay ahead.

“Cody was only 2-years-old when we found the tumour in his left eye” says Ami, “he started treatment shortly after which continued into the following year.”

Cody spent his third birthday in hospital and due to the aggressive treatment, he became deaf and lost one eye. He also suffers from anxiety as a result of long hospitalisations and traumatic hospital procedures.

Throughout this extremely difficult time, Very Special Kids helped Cody and his family by providing emotional support and guidance from a trained Family Support Practitioner named Peggy.

“Peggy has been an incredible support” says Ami, “there were days where I felt like I couldn’t do it and she was never judgemental. She has been great at putting the normality back into how we’re feeling.”

Very Special Kids also provided trained volunteers to support the family whilst they were in hospital.

“There was a time Cody was in hospital for 13 weeks straight and having extra support from the volunteers was really helpful and meant I could take a break. They would come in, sit with him and made him feel more comfortable at what was a very difficult time.”

Now 9 years old, Cody is a survivor of extra ocular retinoblastoma. But while his story has a positive ending, there are many children that Very Special Kids support who do not make it.

“These kids who have a terminal condition are really dealing with the pointy end” says Ami, “if people don’t support these kinds of services then there’d be a whole lot more families out there in crisis. I’m very thankful for the support.”

How you can help support families in need

On the 26th February the ‘13th Beach Osteopathy Kondak Triathlon’ will take place involving a 400m swim, 14km cycle and 4.4km run – the perfect distance for competitors at any level.

The funds raised from the Kondak Triathlon will provide families in the Barwon region with a full 12 months of services from Very Special Kids. This includes 24 hour specialist nursing care at Very Special Kids hospice in Malvern, trained family volunteers and all year round support from a Family Support Practitioner based in Torquay.

Register now!

If you have already signed up, you can begin fundraising here.

Ballarat family festivities

Earlier this month 18 Ballarat families supported by Very Special Kids attended a very special Christmas party.

The children had a wonderful time bouncing in the jumping castle, having rides on the back of a Harley Davidson as well as zooming around in the CFA buggy.

Santa then presented gifts to over 50 excited children followed by a delicious BBQ lunch and plenty of yummy treats for everyone.

On behalf of Very Special Kids, we wish to say a big thank you to The Wendouree CFA and the Ballarat Rotary Club who kindly sponsored the event. We appreciate your support and enabling us to bring joy to very special families this Christmas.

“Thank you for such a lovely day on Sunday. It was a great day and we were made to feel so special and loved. It was lovely catching up with the other parents and families – time seemed to way too quickly” – parent supported by Very Special Kids

Giving initiative

Last weekend the Jewish Teen Giving Initiative held a very special dinner event and presented $2000 of funds raised to Very Special Kids.

The group consists of 17 year 9 students from all different schools that have come together to learn about philanthropy, aligning their values with different charities, fundraising, giving and about the Jewish faith.

Over the past year, the teens undertook a journey to identify charities that align with their values as a group. They decided to support three charities, one being Very Special Kids.

In order to raise funds, the teens organised a fun Zumba night, a tasty sausage sizzle and an entertaining movie night which proved to be very successful.

On behalf of Very Special Kids, we wish to say a big thank you to everyone involved in the Jewish Teen Giving Initiative, we appreciate the support!

A very special Christmas party

Parents, siblings and children supported by Very Special Kids recently attended the Family Christmas Party for a day of family fun.

Soaring and tumbling on the Aero Bounce proved to be a highlight of the day, with children also enjoying the animal farm, craft activities, a Liberty Swing, footy throws and face painting.

The arrival of Santa was highly anticipated and, on a firetruck provided by the 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 our dedicated team of trained volunteers. Special thanks also to the Metropolitan Fire Brigade and Heartfelt Photography for their ongoing support.

Make your Christmas gifts count

Christmas is a time of giving, and this year you can help to give back to those in need by turning your Christmas wishes into charitable donations thanks to High Street Northcote.

Visit www.christmaswishes.online, select and wish and share it to your Facebook or Twitter profile.

Each day during December one person will be chosen as the daily Wish Ambassador. If that’s you then you will be asked to nominate one of four charities including Very Special Kids, and The Northcote Business Association will donate $50 to that charity on your behalf!

If you’re chosen as Wish Ambassador please nominate Very Special Kids because every donation helps us to continue caring for families and children in need.

Wish Ambassadors will also be in the running to win one of two major prizes.

Visit www.christmaswishes.online