Ashton Hayes with (from left) Steve Waugh, dad Phil Hayes, mum Angela Matthew and his little sister, Eliza Mae, at the Steve Waugh Foundation's Rare Stars event last year, moments before Ashton took his first steps. Photo Contributed
Ashton Hayes with (from left) Steve Waugh, dad Phil Hayes, mum Angela Matthew and his little sister, Eliza Mae, at the Steve Waugh Foundation's Rare Stars event last year, moments before Ashton took his first steps. Photo Contributed Contributed

All we ask campaign highlights rare diseases

STEVE Waugh did not immediately realise the significance when Ashton Henri walked across the Luna Park pavilion to meet him, his parents by his sides.

Inspired to take his first steps at last year's World Rare Diseases Day get-away at the Sydney amusement park, the Goonellabah boy covered about 30m with his walking frame to meet his cricketing idol.

"I didn't understand how much of a big deal it was until I was told it was the first time he had walked unassisted," former Australian cricket captain Waugh said.

"It was an incredible moment. I think it was because there was so much goodwill in the room.

"People were so happy and friendly... I think he just decided it was his time."

That was one year ago.

Today, the Steve Waugh Foundation is again raising awareness of rare diseases and the Australian families who live with them.

Ashton is one of only two boys in the world with a rare form of Atypical Rett syndrome, and at eight years old has already outlived his life expectancy by six years.

Sufferers of the condition rarely have the ability learn and retain skills, but Ashton, who cannot speak, has learned to use an iPad to communicate with his family and make decisions.

He also communicates through weekly music therapy classes - Johnny Cash is his favourite artist - and is an avid sports fan, particularly when it comes to cricket.

So it was fitting that his first steps were to meet the "Iceman" of Australian cricket.

"When the cricket's on, Ashton gets his mini cricket bat and sits under the TV, pretending to hit the ball," his mother Angela Matthews said.

"Every time they take a run, he kicks his legs and pretends he's running with them."

Inspired by the courage and character of families affected by rare diseases, Waugh and his wife Lynette established the Steve Waugh Foundation 10 years ago in recognition of the many people who fall through the cracks through no fault of their own.

Built on the philosophy of being "somewhere to turn" for sufferers of the rarest diseases, the foundation has supported more than 500 families with individual grants, in addition to funding research, awareness campaigns and respite camps.


"The rare disease patient is an orphan of the health system, and this needs to change," Waugh said.

"Here in Australia, there is a particular lack of awareness of the impact of rare diseases as well as a lack of strong co-ordinated advocacy.

"Rare diseases are not recognised as a public health priority in Australia."

Ms Matthews asked Northern Rivers families to spare a few moments today to talk about rare diseases and the lives they affect.

"It doesn't have to be a big deal - it's just nice for people to acknowledge it, be sensitive about it and act safely around it," she said.

"Just be mindful that people out there have rare conditions and their lives are not straightforward.

"Next time you see them on the street, say hi and realise that they are people first, disability second."

Ms Matthews is certain her son can live a fulfilling life despite the seizures and other obstacles he faces, and said he was lucky to live in a community so accepting of people's differences.

"He's strong and robust and we have access to wonderful healthcare professionals locally, even though we're in a regional area and have to make trips to Brisbane and Sydney," she said.

"He has a good, healthy diet and there's no reason he should not have a good quality life.

"I would be ignorant to think his life won't be shortened, because his body takes a pounding.

"His body is going to wear out faster, but he is light and joy personified and we will be grateful to have him in our lives for as long as we can.

"At the moment, we don't think his lifetime will be shortened to the next few years.

"We're hoping to have him well into his 20s and 30s."

The Steve Waugh Foundation has asked Australians to share a video starring children with rare diseases telling their stories with the hashtag #allweask to help raise awareness.

 

FACTBOX

World Diseases Day is held on February 28 every year to raise awareness about rare diseases and the impacts they have on those affected personally and their families.


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