Shattered parents have been forced to come to terms with the devastating reality all three of their sons will be in a wheelchair by the age of 12 – and are unlikely to live beyond young adulthood.
It’s been nine months since Melbourne twins Riley and Cooper Woronka, 7, were diagnosed with Duchenne Muscular Dystrophy, a rare genetic disease affecting the muscles, which worsens over time.
The disease has no cure and while some sufferers have lived well into their 30s and 40s, the average life expectancy is just 26.
The boys’ mother Bekk, 28, and Nick, 29, decided at the time to also get their youngest son Logan 2, tested, who was diagnosed three weeks later.
Twins Riley and Cooper Woronka, pictured with their brother Logan (middle) were diagnosed with Duchenne Muscular Dystrophy last September
‘It was completely earth-shattering,’ Ms Woronka told Daily Mail Australia.
‘We were still coming to terms with the twins’ diagnosis and didn’t expect our third son to have it as well. We didn’t expect life would be that cruel.
‘The hardest thing is knowing they will die so young, which is unfair.’
Born five weeks premature, Riley and Cooper were three when concerns were first raised about them being slower than other youngsters at their childcare.
Ms Woronka took them to a GP, who referred the boys to a specialist, who assured the boys were fine after a quick examination of their hips.
Parents Nick and Bekk (pictured with their boys) are determined to give their sons the best life possible with plans to see as much as the world as they can
Concerns were raised again when the twins started school.
‘The sports teacher was worried that the boys ran slower and couldn’t jump like the other kids,’ Ms Woronka recalled.
‘They boys had developed enlarged calves by this stage. I took them back to the GP, where I told I was being an overreactive first-time mum and that the boys had genetically big calves.’
She eventually took her boys to an osteopath, who immediately referred them to neurology at the Children’s hospital.
Tests revealed Ms Woronka was a carrier of the gene of the disease.
‘You think it’s bad enough that two have got it and you think surely not the third, life could’t be that cruel,’ she tearfully told Seven News.
The Woronkas last Christmas, three months after the three boys were diagnosed
Bekk Woronka (pictured) is shattered knowing her three sons will likely die young
The option to get Logan tested at the time was an easy but gut-wrenching decision.
‘We wanted to know sooner rather than later,’ Ms Woronka told Daily Mail Australia.
She and her husband now treasure every moment they have with their sons, whom she described as superheroes.
The twins are still active and now rely on mobility scooters on long trips but will eventually will start falling over more frequently and end up wheelchairs.
‘The twins just get on with life- they know they have the disease and why they can’t run so fast,’ she said.
‘Having each other is a big help as they are each best friend.’
‘Logan still runs around like any other two-year-old.’
The couple chose to also get youngest son Logan tested after being told their twins had the rare genetic condition which will eventually claim their lives
The boys’ diagnosis has turned the family’s life upside down.
‘Our priorities and perspective on life have changed,’ Ms Woronka said
‘We got married young and were saving to buy a house, which has all changed. Our goal now is for our boys to see the world while they can.’
The Woronkas were planning to enjoy a family holiday in Hawaii before coronavirus put travel plans on hold.
‘We’re now planning a bigger trip in 2022-23 to also include Disney World, which the boys want to do,’ she said.
A GoFundMe page to get a wheelchair accessible van and give the boys the best life possible has raised more than $15,600 towards the $70,000 goal.
‘Our priorities and perspective on life have changed,’ Bekk Woronka (pictured second right with her husband and three sons) told Daily Mail Australia
‘We moved to a bigger house, adapted to a medication regime and stretching routines and night splints,’ Ms Woronka states on the page.
‘We’re now at the stages we’re we need to start thinking about a Wheelchair accessible van for the boys near-future so we want to start fundraising now as this will cost us so much money that we just don’t have.’
Ms Woronka had this final plea to parents concerned about their children’s health but have their worries dismissed.
‘Always trust your gut instinct and if the doctor says nothing’s wrong, get a second opinion,’ she said.
Bekk’s ‘superhero’ boys are still active but will all likely be in wheelchairs by the age of 12