NATALIE Watson knows first-hand the value of Very Special Kids.
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The Junortoun mother of has been a beneficiary of the organisation, which cares for children with life-threatening conditions by providing Victoria’s only children’s hospice and professional family support services.
Ms Watson has two sons - William, 7, and Hamish, 5 - who suffer from the rare condition Adenylosuccinate Lyase Deficiency.
The neurological disorder affects about 60 children world-wide. William and Hamish are two of only six cases in Australia.
Ms Watson says her efforts to give the boys the constant care they need would not be possible without the aid of Very Special Care.
The children's charity supports 21 families, all serviced from an office in Ballarat.
That will change in April when Very Special Kids opens an office in Bendigo.
Family support manager Rachael Ficinus said the support service estimated there was as many as 50 more families in Bendigo that needed its services.
"We hope to be able to reach more families in the region," she said.
"When a child has a life-threatening condition it is difficult for the entire family.
"Our professional support services can be a hand in darkness for these brave families, giving them the care they desperately need."
The organisation is on the lookout for an office space and a qualified family support officer.
Support services offered in Bendigo will include counselling for children and parents, trained home volunteers, group therapy and bereavement programs and improved access to the Very Special Kids Hospice in Melbourne.
The office will cost $100,000 a year to run, made possible through the fundraising efforts of a Bendigo cycling group and a donation from Gandel Philanthropy.
The Bendigo Tour of Tasmania cycling group has already raised $100,000 ahead of their ride from February 20-26.
Cyclist Andy Hoare said the group was keen to see families get access to the services they needed.
"These families face many challenges and feel honoured to have been able to help them," he said.
The increased access to Very Special Kids services and staff will come as a relief to families like the Watsons.
Our professional support services can be a hand in darkness for these brave families, giving them the care they desperately need.
- Rachael Ficinus
Natalie and Brian Watson have previously turned to the organisation for respite care when taking a break for their caring duties and for counselling.
Ms Watson said the condition of her boys was progressing.
“We have been unsuccessful in controlling the seizures completely with medication and diet modifications,” she said.
“We can’t plan too far ahead.
Everyday we wish for them to have a better quality of life.
“It can be a real emotional rollercoaster and it takes its toll on both of us.”