Canberra twins join forces to fight disease that kills two Australians every day

Before February last year, Canberra’s Ashlee Lopez was a competition-level boxer, winning trophies and titles across Australia.

“His whole life was boxing,” his devoted twin sister Kobe Lopez says.

“He lived and breathed it.”

But Ashlee now uses a wheelchair and is unable to walk, talk or move. Diagnosed at the age of 39, he is among the 2100 Australians living with motor neurone disease (MND) – and the prognosis is not good.

“It’s completely taken everything away from him already,” Kobe says.

“It’s just in those end stages. And it’s heart-breaking. We held a 40th birthday party at Bondi Beach, but I know every birthday after this I won’t be able to celebrate because he’s not going to celebrate with me. I’m losing my best friend.”

But don’t think Ashlee is done fighting.

He and Kobe are inviting the community to join them on a walk around Lake Burley Griffin this Sunday, 4 June, to raise funds and awareness for MND research.

MND describes a group of diseases that affect nerve cells, gradually preventing messages from the brain reaching the muscles and robbing a person of movements such as walking, swallowing, talking and breathing. The speed at which it progresses varies, but it is life-shortening and there is no cure.

Every day, two Australians are diagnosed with MND and two die from the disease.

Kobe says Ashlee is “very passionate” about helping in his own small way, “to find a cure so one day this terrible disease will not continue to take lives in the horrible way it is taking his”.

“Inside, he’s still the same person and wants to be able to talk but he just can’t,” she says.

“So we also want to do this for him so that he knows everyone loves him and is behind him.”

Kobe, their loyal parents and older sibling Scott, as well as Ashlee’s trusty German Shepherd, will take part in the ‘Ash’s Angels’ walk. With Ashlee’s history in the public service, many of his colleagues turned “lovely friends” will come too.

The funds on the event’s GoFundMe page have already doubled the $5000 target, all headed for the Motor Neurone Disease Research Institute of Australia.

“Everyone has reached out, and even people who can’t afford to donate have been sharing messages,” Kobe says.

Ashlee designed the logo for the fundraiser, and if you’re wondering about the rat’s tails on the boxing kangaroos, “when he fell sick, he started growing a rat’s tail”.

In all this, Kobe says Ashlee has yet to make a complaint, putting this down to the “boxing mentality”.

“He’s just been so brave. He’s just always fighting and being brave to the very end.”

Help Ashlee fight MND this Sunday, 4 June at 11 am. Meet at the International Flag Display, Queen Elizabeth Terrace, Parkes.