Twins are close genetically, but Canberra twins Ashlee and Kobe Lopez are inseparable, particularly ever since Ashlee was diagnosed with motor neurone disease (MND) last year – at just 39 years of age.

Ashlee’s twin sister Kobe has become her brother’s voice as Ash can no longer talk, helping him to raise awareness and funds for MND research.

“We were just lucky to spend our 40th birthday together, we had a party at Bondi Beach,” Kobe says. “It’s sad to think that every birthday after this is not going to be together but every day now we spend is cherished.”

About 2,110 Australians are currently living with motor neurone disease. Every day, two people are diagnosed with MND in Australia and two people die from the disease.

So Ashlee and Kobe are organising a walk this Sunday 4 June to raise money for a cure. You’ll know Ash by his rats-tail, which he started growing when he was first diagnosed. He also sports a tattoo of boxing kangaroos as he used to be a trophy-winning boxer and continues to be a fighter.

“We’re extremely close,” Kobe says. “My five kids – four girls and one boy – absolutely love their uncle Ash, he’s so good with them and they’re extremely close. Ash got tattoos of their kisses and signatures.”

The lifetime risk of developing MND is about one in 300 by the age of 85, with risk increasing steadily as people get older. Slightly more men than women are diagnosed with MND, and most commonly they are in the 50-to-60-year age group. However, MND may be diagnosed in adults at any age.

“It’s absolutely heartbreaking to watch your loved one go through something like this but Ashlee is first and foremost a fighter,” Kobe says. “He always has been and I know that he will fight this to the very last breath that he takes.”

Help Ashlee to fight MND this Sunday 4 June at 11am, meeting at the international Flag Display, Queen Elizabeth Terrace, Parkes. To donate, visit https://gofund.me/e9b8b1cc​