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.