When Mark and Nicole Logan discovered their unborn child had an incurable spinal deformation they had no one to talk to.
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The first question the doctor asked them after delivering the news was whether they wanted to continue with the pregnancy.
"They told us to go away and talk about it," Mr Logan said.
"You're going through shock, and they give you a pamphlet and tell you to come back next week with a decision."
That was seventeen years ago and Caleb, their first born son who has had more than 20 operations and is largely confined to a wheelchair, is now a Year 11 student with dreams of being a sports trainer.
Caleb and another of his five siblings have spina bifida, although fifteen-year-old Connor's case is far less severe.
Four of the Bendigo couple's children were born without the birth defect which affects between 30 to 35 Victorian babies each year.
One, a boy named Joshua, died fewer than two hours after he was born.
In a piece written for a spina bifida article, Ms Logan described the emotional tumult she experienced with each diagnosis.
"You are faced with making the hardest decision of your life, to put an end to a pregnancy you so much want," she wrote.
"In a split second your whole life has been torn apart, the happiness and bliss you felt at becoming a parent has now been shattered. You don’t know what to do or how to survive it."
Speaking to the Bendigo Advertiser this week following the national Spina Bifida Awareness Week, the Logans decried the lack of support facilities available.
In 2009, Ms Logan created the Central Victorian Spina Bifida Support Group and, together with her husband, raises awareness and money for regional families affected by the condition.
Since its inception, they've helped families with fuel money for the frequent hospital trips, spare wheelchairs and a valuable spring board for support and advice about navigating the complex path of having a child with a disability.
For the Logans, sharing their experience is deeply personal and challenging, but, they believe, incredibly important.
"When Caleb was born we were given 10-year-old information, we had nothing to go on" Mr Logan said.
"We want to be able to provide families who are experiencing what we did with information and support we didn't have access to."
For information about how to donate, or to seek support, phone Ms Logan on 0414 594 157 or visit www.cvsbsg.org.au.