Boy who suffered gastro-like symptoms dies from rare heart condition

When young Rio’s parents took him to hospital with gastro, they had no idea 40 days later they would return home without their little boy.

When young Rio Fowler’s parents took him to hospital with what was believed to be just gastro, they had no idea they would return home without their precious boy 40 days later.

Rio, remembered for his infectious smile and cheeky personality, was just 17 months old when he died from a rare terminal heart condition in January 2018.

It was so rare, paediatric doctors informed parents Ryan and Karen they had never seen anything like it before – nor did the condition have an official term.

“He had gastro; we think maybe from my daughter who was at preschool at the time,” heartbroken dad Ryan said.

It wasn’t until Rio presented to emergency for the third time in a week that things took a drastic turn.

Ryan said that his son’s episode of gastro, and the severe symptoms associated, accelerated an underlying condition.

Karen and Ryan Fowler with their precious boy, Rio. Picture: Rio’s Legacy

“His blood pressure was extremely high and his heart was beating over 220,” Ryan told news.com.au. “There was immediate concerns around that and that’s when he got transferred from emergency to ICU.”

Ryan said doctors were concerned he would go into cardiac arrest because his heart was working so hard and their sole focus became to keep the little boy alive.

Within just a few weeks, the toddler underwent more than five invasive operations – including two amputations to one of his legs (high thigh and hindquarter).

The then-15-month-old’s arteries had failed to supply enough blood to all his major organs and the blood vessels around his body.

It was during this time Ryan and Karen were told Rio had a terminal condition due to arterial malformations.

Rio, pictured with his sister Remi, has been remembered for having a ‘cheeky grin’.

“Numb is one word you could describe how we were feeling,” Ryan said.

“It’s like a snowball. It kept rolling, you couldn’t stop it, it kept getting bigger and faster.

“And as a father, as parents, you try to do the best you can to protect your children, but it was out of our control and that was the hardest part.”

Ryan explained his son couldn’t stomach food.

“He didn’t eat for three weeks, which was horrific, but he still smiled no matter what.”

The devastated father said though his son’s condition was diagnosed as terminal, Rio continued to inspire them all with his smile and fight.

Just before Christmas, the family was given the devastating news there was nothing more doctors could do.

Ryan said from the incredibly caring and supportive hands at Sydney Children’s Hospital Randwick, the Fowlers moved to the children’s hospice Bear Cottage at Manly.

“It’s a tough place to go to,” Ryan said. “But what they gave my son and family I can never repay them.

Rio was hospitalised in November 2017, with a bad case of gastro.

The gastro accelerated an underlying condition that paediatric doctors told Rio’s parents Karen and Ryan they had never seen before.

“They allowed us to be a family and spend that time together when Rio passed. We went to the beach which was lovely. It allows kids to live, not die, and that speak volumes.”

Rio sadly passed just one week after he was transferred to Bear Cottage on January 15, 2018, after his condition worsened and his body progressively shut down.

“Rio had a cheeky grin. He loved playing with his sister. He also loved Milky Ways. Rio fought all the way to the end,” Ryan told news.com.au.

Rio’s life was cut short when he died from a rare terminal heart condition after spending 40 nights in hospital. The 17-month-old spent his final two days at Bear Cottage in Manly, NSW.

Keeping Rio’s memory alive

Ryan and Karen have since made it their mission to keep Rio’s legacy alive and do what they can to give back give back.

And from their unimaginable loss, a remarkable legacy was born – Rio’s Legacy.

The charity has since raised just shy of $600,000 through runs, bike rides and other events.

The organisation set up in Rio’s memory has given funds to the only four children’s hospices in Australia.

It has also helped 367 families stay together by paying for parents’ accommodation while their child is in ICU at Sydney Children’s Hospital – and incredibly Rio’s Legacy was able to raise $120,000 for a new paediatric hospice in Western Australia, the first in that state.

“It has become my passion and drive,” Ryan said about the charity.

“We want to help build more hospices to help other families and to give them that opportunity to be a family.”

Ryan said it is his son Rio who inspires him to “keep going”.

This year, Rio’s Legacy will be involved in the City2Surf for the first time, to be held on August 14.

“By joining our team, you’ll help us to build a hospice to assist children with a terminal illness,” Ryan said.

You can donate to Rio’s Legacy here.

Originally published as Boy who suffered gastro-like symptoms dies from rare heart condition