The process started in 2008 when the Adams family’s “lives changed in so many ways”.

Aaron Adams, then 11-years-old, started experiencing difficulty retaining information.

“When asked to do a couple of things at once, he seemed to only be able to do the first or last thing he was asked,” Aaron’s mother Kellie Adams said.

Andrew and Kellie Adams started to notice further cognitive deterioration in Aaron.

 “During the next few years Aaron showed more cognitive deterioration to the stage that he could no longer talk, making it extremely hard to communicate with others,” Mrs Adams said

“It truly was like looking at an elderly man with dementia.

“It was a hard road trying to get answers, watching our son disappear before our eyes, for almost six years.”

After a short stay in the Royal Children’s Hospital the family waited months to find out what was wrong.

“In November 2013, we got the news that our son had an extremely rare disease called Niemann Pick Type C,” Mrs Adams said.

She said 21-year-old Taylor was then tested to see if she was a carrier of the disease.

“It was confirmed in late May 2014 that Taylor also has the Niemann Pick Type C disease,” she said.

Niemann Pick Type C Disease is a rare genetic disease that affects a person's ability to properly process cholesterol.

Excessive amounts of cholesterol accumulate in the liver, spleen and eventually the brain, causing irreversible damage.

The disease causes enlarged spleen or liver, loss of balance, difficulty walking, slurred speech, seizures, memory loss, dementia and lack of muscle control among other symptoms.

The Adams family started the Niemann Pick Type C Disease Foundation to support those in the same situation.

The foundation is made up of a small group of parents, family and friends.

“We are frantically fundraising to raise much needed funds for research, as there is no government funding,” Mrs Adams said.

“We need help to raise awareness and funds, which will also help the wider community.”

The Bendigo Dragons gridiron team will hold a tin rattle and barbecue at their home game this weekend.

The game starts at 7pm at Tom Flood Centre.

To make a donation or to find out more about the disease, visit www.npcd.org.au or call Kellie Adams on 0419 890 424.