Ironman Matt Bevilacqua tells how IVF baby evaded ‘the worst disease you’ve never heard of’

Ironman Matt Bevilacqua has lived his entire life with “the worst disease you’ve never heard of” and has gone to extraordinary lengths to prevent his future child from the hereditary condition.

Champion Ironman Matt Bevilacqua has opened up about his incredible IVF journey to fatherhood and the cutting-edge technology which spared his unborn child from a rare hereditary condition dubbed “the worst disease you’ve never heard of”.

Bevilacqua, one of the top stars on show at this weekend’s final round of the Shaw and Partners Iron Series at North Burleigh on the Gold Coast, has lived his entire life with the debilitating disease Epidermolysis bullosa, or EB, a condition also known as “butterfly skin” which leaves those affected with incredibly sensitive skin which can tear, rip or blister under even the slightest irritation.

Hamish McLachlan interviews butterfly child Tilly Wilkes, who has epidermolysis bullosa

It left Bevilacqua questioning what life might be like for his future children, until he learnt of revolutionary DNA science which allows doctors to isolate the cells carrying the genetic mutation and in turn, ensure offspring can be born free of the disease through IVF.

It was the news Bevilacqua, 32, and his partner, fellow surf life saving star Brielle Cooper, had been longing to hear and after an exhausting testing process, they are now expecting their first child in June.

Ironman star Matt Bevilacqua and his partner Brielle are excited their impending arrival will escape the genetic condition Matt has endured his whole life. Picture: Adam Head

Bevilacqua, who has what is considered a mild form of the disease, is a long-time ambassador for the EB support group DEBRA Australia and said he was beyond relieved to know he would not be passing the condition on to his children.

“It was something I worried about all the time and even as a kid every time I got a blister I worried about whether I was going to pass this on to them,” he said.

“It’s why I gravitated towards surf sports because you don’t need to wear shoes and wearing shoes playing sport would tear my feet apart.

“But thanks to these medical advancements I know I won’t have the guilt about passing it on to my kids.

“It’s an incredible process.”

That process involved sending DNA to scientists in the Netherlands, the US and South Australia before the couple was able to proceed with IVF treatment safe in the knowledge that the EB gene would not be passed on.

It’s been a huge year for surf racing’s glamour couple, who became engaged, bought a house and celebrated pregnancy all in the space of a few months.

Cooper, 25, who has taken a break from the rigours of top competition during her pregnancy, said she was also thrilled with the knowledge that EB would not make its way into the next generation of their family.

“I can see the impact EB has had on Matt so it’s really given us that peace of mind that we’re not going to have it in the next generation,” she said.

Matt Bevilacqua and Brielle Cooper are eagerly awaiting the arrival of their first baby. Picture: Adam Head

It was at a family support camp for DEBRA Australia where they first heard a nurse talking about medical techniques which allowed scientists to remove the EB genetic material from DNA, a breakthrough which could potentially wipe out the disease altogether.

For now, Cooper is content to sit out the competition season which Bevilacqua said helped with his own pre-race nerves.

“The main difference is that now I don’t get crazy nervous watching the girls racing before I have to go out there and do my own race,” he said.

This year’s Shaw and Partners series winner will be crowned on Sunday afternoon under a new elimination-style format.

Matt Bevilacqua holds the Series trophy after winning the Nutri-Grain Ironman series in 2023. Picture: Chris Hyde/Getty Images

It means previous results count for nothing in the winner-takes-all finale, where Bevilacqua will be among the prime contenders in a field also featuring surf king Ali Day and New Zealand champion Joe Collins.

In the women’s, defending champ Lana Rogers will face threats including Lizzie Welborn, who is hoping to be the first NSW Ironwoman to win the series trophy in more than a decade.

Sunday’s finals will be broadcast live on SBS.

Originally published as Ironman Matt Bevilacqua tells how IVF baby evaded ‘the worst disease you’ve never heard of’