BRAVE BEV’S HEARTACHE
RARE DISE ASE HITS FAMILY THREE TIMES
JOSH Reed was always there for a mate, no matter what they needed.
The dedicated friend and beloved son died suddenly at 30 last month after battling Danon disease, a rare genetic condition impacting the heart.
His mum, Bev, also battles the disease, as did his late brother Cale.
“People were drawn to Josh,” Bev says. “He loved being with his mates, helping out with their kids. If anyone needed anything, he was always there for them.”
Friends have paid tribute to his “cheeky smile” and great sense of humour, memories of midnight cruises and McDonald’s runs, as well as his de facto uncle status among their kids.
Josh had been seriously ill on-and-off since turning 19, later requiring a pump to assist cardiac circulation and then a heart transplant.
After battling to recover from the lifesaving surgery, he was diagnosed with cancer.
“The cancer was definitely a big part of his life,” his mum says. “He just had a love for everyone, loved people’s friendships and helping them out.”
That devastating blow came almost five years after Bev and husband Russell lost their youngest son, Cale, whose weakened immune system and heart post-transplant left him unable to fight off the flu.
“Cale was very into cars, a real revhead,” she recalls. “He was a real family man. Being the youngest we were very close.”
Eldest son Kevin shows no signs of the condition, although he’s in the process of having DNA testing completed.
“I wanted to have half a dozen kids at one point, and had the three boys,” Bev says.
“I’d always wanted that life, and it’s just been devastating.”
Acting as a carer for two seriously sick sons and battling health problems herself, Bev says she often “ran on adrenaline” to get through.
“Cale got his transplant in February, then died seven months later,” she says.
“Four months after he passed away, I got my heart transplant. It was very hard going through the grieving process as well as trying to be positive enough to get well again.”
An inevitable prognosis of Danon disease is heart failure, requiring a transplant. It’s the added time and quality of life with her boys that Bev and her family are grateful for.
“A transplant is the biggest change of your life,” she says. “While it’s a very sad thing, it’s something that lives on for other people and it’s a great honour for us as recipients.”
A heart transplant gave Josh the confidence to see his friends again.
“He was certainly making up for lost time,” she says.
“Josh couldn’t wait to see his friends again; a big part of his life had been spent in and out of hospital.”
It was the incredible team at The Alfred hospital that helped Bev, Russell and their family along the twists and turns of navigating Danon disease.
“They are amazing people,” she says.
“We just need to give a huge thank you to the doctors, nurses, transplant team and the heart transplant clinic. They’ve been so good to us.”
Bev says the family is coping as best they can, “still going through the motions”.
“A lot of people have popped in to cook us food, and we’ve got a house full of beautiful flowers and well wishes,” she says.
She describes Kevin — “a tower of strength” — her mother and daughter-in-law as a source of support during tough times.
The bright light at the end of the tunnel are Bev and Russell’s three young grandsons — Oliver, Gus and Harrison — who keep them busy.
“They’re the absolute best,” Bev says.
The boys also gave their uncles something to fight for, the two eldest being born at critical points in Josh and Cale’s medical journeys.
The day Josh came out of intensive care after having his ventricular assist device implanted, Bev’s eldest grandson Oliver was born.
Second grandson Gus followed when Cale received his heart transplant.
“It gave the two of them that spur and fight to see their nephew,” Bev says.
“The kids keep us going, they’re just our entire life. That’s what keeps my husband and I moving forward.”
To find out more about organ donation or to register as a donor, visit donatelife.gov.au
A TRANSPLANT IS THE BIGGEST CHANGE OF YOUR LIFE. WHILE IT’S A VERY SAD THING, IT’S SOMETHING THAT LIVES ON FOR OTHER PEOPLE AND IT’S A GREAT HONOUR FOR US AS RECIPIENTS.”
BEV REED