FOR the Chignell family of Sailors Gully, children’s charity Very Special Kids has been of immense value.
Ēadweard, one of Sarah and Stuart Chignell’s five children, is among nine people worldwide diagnosed with early infantile SCN1A encephalopathy.
From emergency respite to counselling and a sibling support program, Mrs Chignell said Very Special Kids had supported the family through the challenges of living with the rare genetic disorder.
Mrs Chignell was hopeful of this week returning some of that kindness by meeting Very Special Kids volunteers in Bendigo and Eaglehawk and letting them know their efforts are appreciated.
Local branches of the children’s charity will be part of the annual Very Special Kids Piggy Bank Appeal, which rolls into the region tomorrow.
A three metre tall, 700 kilogram piggy bank will visit Castlemaine, Eaglehawk, Bendigo and Kyneton as it traverses the state.
The appeal aims to raise $1 million to assist children with life-threatening conditions.
Mrs Chignell said the charity had stepped in and helped the family when no-one else was willing or able to.
“Out of every other organisation, Very Special Kids has supported and given us the most,” she said.
“They go out of their way to actually find out what families need.”
Once the needs had been identified, Mrs Chignell said Very Special Kids went out of its way to problem solve.
She said Road to Respite, a service transporting regional families to the charity’s hospice in the Melbourne suburb of Malvern free of charge, was born of the experiences of families.
“I know so many families that have used that,” Mrs Chignell said of the initiative.
Very Special Kids is piloting the program over a period of two years.
With Mr Chignell overseas exploring opportunities for aquaponics, his wife said the knowledge Very Special Kids could support her in her care of Ēadweard if necessary was a source of comfort.
“The respite service is one of the biggest things in the back of my mind with Stuart being in India,” Mrs Chignell said.
Her family is one of 45 in the Loddon Mallee region supported by Very Special Kids.
The charity assists more than 900 families, statewide.
Very Special Kids chief executive officer Michael Wasley said operating the charity cost more than $8.5 million a year.
“Without donations from our community we would not be able to continue caring for these brave families,” he said.
The appeal will be held tomorrow at both the Commonwealth Bank Castlemaine from 10.30am – 3.30pm, and at Commonwealth Bank Eaglehawk from 11am – 2pm.
Look out for the giant piggy bank on Friday at both the Commonwealth Bank Bendigo from 10.30am – 3.30pm, and at the Commonwealth Bank Kyneton from 10.30am – 3.30pm.