But she hopes that will not always be the case.

That is why her family take part in the annual Walk 4 Hope at Speers Point, being held this year on September 10.

Ms Young’s mother Angela Hiscock started the walk two years ago to raise funds and awareness for the little-known disease which has no cure.

“There are two points to the walk, to create awareness foremost because it is a disease that not many people know about,” Ms Hiscock said. “I didn’t know anything about it until it was in our family. It’s a brain degenerative disease and as it stands at the moment it is terminal and incurable.

“They are coming great guns with the research into it, having trials that will hopefully delay some of the symptoms because when you look at it, it’s like motor neurons, Parkinson’s and dementia all rolled into one big bundle, so if you can put things off longer you’ve got a better quality.”

Ms Young, 28, and her sister Emma Brennan, 27, were both tested for HD nine years ago. They both tested positive.

The disease is passed on from a parent and there is a 50-50 chance it will be passed on. The degree to which it is passed on varies.

Ms Young has already lost five uncles as a result of the disease and said it is hard visiting her father who also has HD and is in a nursing home.

“I find it especially hard to go and visit my dad knowing that in a couple of years I am literally going to be in the same spot,” Ms Young said.

“It’s devastating. It is hard to maintain a positive relationship when it is such a negative reminder.”

She said the 5km walk not only helped raise awareness and funds for the little-known disease but also brought together people in the region with HD.

“It is good just to know that there are other people out there that are going through the same thing, that there are support systems out there, and for families of people too because that’s hard for everyone also,” Ms Young said.

“It’s good to know you don’t have to deal with it alone.”

Find out more at www.huntingtonsnsw.org.au