The Big Give is an event supporting central Victorian community groups. The Bendigo Advertiser will be profiling several of the registered campaigns each week until the initiative ends with a 24-hour giving day on September 1.
The milestone events most people look forward to every year are those Mandy Whitechurch dreads.
With each birthday or Christmas, she is reminded that time is running out for her sons Timothy, 26, and Matthew, 28.
Timmy was diagnosed with Niemann-Pick type C disease, an extremely rare genetic disorder, in 2007.
Matthew’s diagnosis came six months later.
The estimated lifespan of an Niemann-Pick type C patient is about 10 years after diagnosis.
“We’re in year nine with Timmy – I’m worried his time is running out now,” Ms Whitechurch said.
Kangaroo Flat mother Kellie Adams is in a similar position in that she also has two children with the condition.
It took about six years for her son Aaron, now 19, to be diagnosed with the terminal illness.
His sister Taylor was diagnosed with the same illness within months.
“We’re coming up to three years into Aaron’s diagnosis,” Mrs Adams said.
Both families are overdue for a holiday, but are hopeful their Big Give campaign will result in some happy memories.
They have set a fundraising goal of $5000.
Fundraising by the Adams family and Ms Whitechurch is usually for a different cause – the Australian NPC Disease Foundation.
Ms Whitechurch started the foundation in 2009, in response to her sons’ diagnoses.
“I wasn’t about to be told my kids were going to die without a fight,” she said.
The foundation exists to help families in a similar situation.
Ms Whitechurch is the foundation’s president, with Mrs Adams as vice president.
“As a foundation we need $10,000 a month, which covers the expenses and wages of one scientist,” Mrs Adams said.
The research is being carried out at the The Florey Institute of Neuroscience and Mental Health in Melbourne.
Mrs Adams said about three families regularly contributed to funding that work.
The community has supported the foundation in the past, including with a tin rattle and barbecue by the Bendigo Dragons gridiron team during a home game in Bendigo last year.
Niemann Pick Type C affects a person's ability to properly process cholesterol and fatty acids.
Excessive amount of these materials accumulate in the body’s cells, affecting the brain and other organs.
The disease leads to progressive intellectual decline, loss of motor skills, seizures and dementia.