Both her sons were diagnosed with a rare genetic condition which affects less than 100 children worldwide at a young age, and the eldest, William, tragically lost his fight with the illness in July at the age of nine.

She says the support of Very Special Kids was invaluable while William was in palliative care, and the organisation’s new office in Long Gully will make the process of managing her younger son Hamish’s illness that little bit easier again.

“Very Special Kids has been supportive of me and my family for the last five years now and particularly in the past two years when my son’s been involved in palliative care,” she said.

“My son just passed away in July and [they] were able to just offer emotional support for my family.”

Similarly, Krystal Sherwood, whose three-year-old son Edward suffers from Duchenne muscular dystrophy, said the new centre would make a “huge difference”.

“We’re new to Bendigo so it’s been a really good way for us to get to know other people and have someone to talk to when we need help and that kind of thing,” she said.

“Having a case worker in Bendigo, Vanessa’s been great, she’s come out a couple of times and is always there when we need to chat.”

Andy Hoare, who led a team of cyclists in a trip around Tasmania to help raise money to fund Very Special Kids’ Bendigo office, was on hand to help celebrate the opening with the two families yesterday.

“It was a hard ride but it was a good group, we trained hard for it and we really enjoyed that but the best part at the end of the day was the money we raised for Very Special Kids,” he said.

“We’re very happy and proud to be a part of the fundraising for the organisation so they could get an office established here in Bendigo.”

Very Special Kids currently supports the families of 27 children with life-threatening conditions in the Bendigo area.