URGENT CALL: Jesse Vincent (right), with his mother Chris, was diagnosed with Danon disease and urgently requires a heart transplant.
URGENT CALL: Jesse Vincent (right), with his mother Chris, was diagnosed with Danon disease and urgently requires a heart transplant. Keagan Elder

Pulse is rising for Jesse on organ donation list

AT THE age of 18 Jesse Vincent should be in his prime but he is instead staring at the end of his life unless he receives a heart transplant.

Jesse, from Valla, has been diagnosed with Danon disease, a rare form of muscular dystrophy which could lead to a cardiac arrest at any moment.

The disease weakens the heart muscle and affected males, on average, live to 19 if they do not receive a heart transplant.

Jesse's mother, Chris, said just three families in Australia had the rare disease which affects males earlier on than females.

Chris said her other son Jake had just been diagnosed and she was also showing symptoms of the disease.

She said Jesse was diagnosed with the disease on March 17, 2016 after he was hit in the chest by a cricket ball.

But a year earlier Jesse was misdiagnosed which cost valuable time to arrange a heart transplant.

"The average lifespan without a transplant is 18-19. Basically we're running out of time," Chris said.

Jesse was an avid athlete and remains a die-hard sports fan but since his diagnosis he has given up all sports.

With a heart rate monitor on his wrist, he keeps a keen eye on his beats per minute. Even when standing, he feels dizzy.

"I've always got a shortness of breath," Jesse said.

"It's hurting more and more.

"I was told I will never be able to play sport. That was devastating."

Chris said there was a shortage of hearts for men who weighed more than 65kg.

Always in anticipation, Chris said her phone never leaves her side in case a call about a heart does come.

"They're giving us six hours to get to Sydney when we get the call."

Donate Life Week starts on Sunday. You can register at donatelife.gov.au.

Federal member for Cowper Luke Hartsuyker will ride from Coffs Harbour to Port Macquarie on Saturday, August 5 and will be joined by Senator Derryn Hinch on their Ride for Organ Donation.



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