Monthly Archives: February 2016

A weekend of summer fun at Lord Somers Camp

A wonderful weekend away was enjoyed by 21 families, 53 children and 41 adults at the biannual Lord Somers Camp located in Somers on the Mornington Peninsula.

Surrounded by beautiful bushland and overlooking the picturesque beach, families had a rare chance to unwind and have fun together away from everyday challenges.

A group of 100 volunteers cared for the children as they enjoyed arts and crafts activities, games, stargazing and glow in the dark bowling. Time spent at the beach trying paddle boarding, sailing and kayaking was a favourite for the children who splashed around in the water, soaked up some sun and enjoyed trying new activities.

Parents were treated to a well-earned break and pampering at the parents’ retreat, with relaxing massages, beautician services and wine and cheese tasting on offer.

Motorbike rides, a visit from the fire brigade, storytelling and movie night gave families a chance to spend time together and create precious memories, not only with each other, but with other families experiencing similar circumstances.

The weekend was made possible by Lord Somers Camp and Powerhouse who not only coordinated the whole weekend, but also provided 100 volunteers to assist in making a memorable and fun getaway for the families.

Special thanks also to Bay Quilters, Western Port Yacht Club and Harley Owners Group Dandenong for their generous support.


Family fun in the sun at Adventure Park Day

Around 223 parents, siblings and children descended on Adventure Park Geelong for a day of waterpark fun at Very Special Kids Family Day for the Barwon, South West and Central regions.

Abuzz with excitement and faces brightly painted, children had a blast whizzing around on go-karts, swooshing down enormous waterslides and swooping around on giant swings whilst parents were pampered with blissful massages.

Topped-off with a delicious gourmet barbecue lunch, families enjoyed a day free from worry and a chance to catch up with others experiencing similar circumstances.

The event was generously sponsored by Golden Farms, part of the Turi Foods company, who also provided six volunteers to help run activities. Special thanks also to the volunteers who assisted with activities on the day.

Bonding over bowling

14-year-old Ricky Ellul from Craigieburn has Neurofibromatosis, a rare condition that causes tumours to grow in his brain. The tumours have affected intellectual development and his sight, meaning he is now legally blind. However, they don’t stop the ever-positive Ricky from playing double bass, the drums and going tenpin bowling.

The uncertainty of Ricky’s future and the complications that come with his condition has put pressure on his family – parents Mario and Silvana, and Kristina (18), Adam (17) and Bianca (15). The family has endured Bianca having back surgery to assist with scoliosis, and Adam will soon have to an operation to correct severe flat-foot.

To help ease the pressure, Ricky and his family have been receiving special help from a trained home volunteer provided by Very Special Kids.

Volunteer Sam Fahnle went through the training in 2014, and now helps the family by taking Ricky out on weekend excursions, including his favourite activity, Tenpin Bowling – an activity Sam also loves.

The few hours without Ricky in the house on the weekend gives Silvana a chance to have a break and help out her other children, and most importantly, Ricky loves his time with Sam.

The friendship between Sam and Ricky has flourished, with Sam attending Ricky’s birthday and being the first person Ricky called when he found out his tumours had slowed their growth.

“Being a boy, it is good for Ricky to have a male friend to talk to,” says Silvana, “Having a male volunteer to spend time with gives Ricky opportunities to do activities he enjoys, but might not get to do as regularly otherwise.”

Sam is buoyed by the knowledge that his volunteering has a positive impact on Ricky and his family and is eager to recommend volunteering with Very Special Kids to other men. “It’s so worthwhile for the family. It’s only a few hours out of my time and it means so much to Ricky,” says Sam.

Please call 9804 6222 to find out more about exciting volunteer opportunities with Very Special Kids.

Bendigo families to receive more support

Bendigo children living with life-threatening conditions and their families will now receive much-needed support with a Very Special Kids office opening in Bendigo in April.

Very Special Kids supports 27 families in the Greater Bendigo community that are caring for children with life-threatening conditions however, these families are currently serviced from an office in Ballarat.

With the opening of the Bendigo office Very Special Kids will be able to increase services to families including counselling for children, parents and siblings, trained home volunteers, group therapy programs, bereavement support and better access to Very Special Kids Hospice in Melbourne for respite and end-of-life care.

Rachel Ficinus, Very Special Kids Family Support Manager,  says Very Special Kids is determined to support these Bendigo families when they need it the most.

“When a child has a life-threatening condition it is difficult for the entire family. Our professional support services can be a hand in the darkness for these brave families, giving them the care they desperately need.”

Very Special Kids also hopes to reach more families in the region estimating there could be as many as 50 additional families in Greater Bendigo in need of their services.

The Watson family from Junortoun is one of the families that will benefit from the opening of the office. 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 seizures.

Mum Natalie Watson said their condition is progressing and the boys need constant care.

“We have been unsuccessful at controlling the seizures completely with medication and diet modifications. We can’t plan too far ahead. It becomes very overwhelming and heartbreaking. Every day we wish for them to have a better quality of life. It can be a real emotional rollercoaster and takes its toll on both of us.”

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 a Family Support Worker.

The Bendigo office, which will cost upwards of $100,000 per year to run, has been made possible through a generous grant from Gandel Philanthropy and the fundraising of a local cycling group.

Gandel Philanthropy’s Major Grant of $180,000 over three years will firmly establish the Bendigo Office.

Vedran Drakulic, Gandel Philanthropy Chief Executive Officer, said living in a regional centre should not prevent families from accessing such vital support.

“Very Special Kids is unique in supporting Victorian families to navigate their child’s life threatening condition and recovery, and in some instances cope with bereavement. It was also important that there was strong local support to make the Bendigo Office a reality and extend their services to families in and around Bendigo.”

The Bendigo Tour of Tasmania cycling group has already mustered more than $100,000 ahead of their ride from 20 to 26 February, and are still fundraising.

Andy Hoare, a member of the cycling group, said it’s fantastic to be able to support their community through the ride.

“We chose to raise funds for Very Special Kids in the hope of supporting the families in our community that need this care. These families face many challenges and we feel honoured to have been able to help them.”

With resources secured to run the office for three years, Very Special Kids is currently searching for an office space and a Family Support Worker, and plan to open the office in April.

Very Special Kids will need continued support from the community to secure a long-term future for the office, and hopes to offer its services in Bendigo for many years to come.

Very Special Kids achieves hospital standards

Very Special Kids has achieved National Safety and Quality Health Service Standards Accreditation, earning the eight-bed children’s hospice the same stripes as the country’s largest hospitals.

National Safety and Quality Health Service Standards (NSQHSS) Accreditation, usually reserved for large government-funded health providers, was independently undertaken by Very Special Kids to ensure its services were of the same high standard as the organisations that refer patients for hospice care and family support.

Very Special Kids supports 900 families across Victoria that are caring for children with life-threatening conditions, by providing access to Very Special Kids Hospice for respite and end-of-life care, and psychosocial support for parents and siblings.

The organisation excelled in its engagement with families, resulting in the NSQHSS survey team recommending a Met with Merit (MM) rating.

Very Special Kids Acting CEO Kara Briggs said the organisation is proud to offer an exceptional level of care.

“When a child is diagnosed with a life-threatening condition, it is the beginning of a journey that is full of unique and unimaginably difficult challenges that impact the whole family,” she said.

“It’s essential that the care we provide is centred on a family’s needs and delivered with excellence.

“With NSQHSS accreditation, both families and health professionals can have additional confidence in the services we provide.”

Very Special Kids provides ongoing support that starts from the diagnosis of a child’s condition all the way to discharge or through bereavement.

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

The organisation cares for children and families across Victoria through offices in Malvern, Brunswick, Ballarat, Hastings, Shepparton, Torquay, Traralgon and Warrnambool.

Being two-thirds self-funded, Very Special Kids relies on community support and fundraising to deliver its services.