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Pictured: Ryan and Karen Fowler with daughter Remi and their late son, Rio
The shattered parents of a toddler who was hospitalised with a stomach bug but tragically died days later with a rare artery condition pledge to help build end-of-life facilities for children.
When Ryan and Karen Fowler’s four-year-old daughter Remi came home from pre-school in November 2017 with gastroenteritis – a very common condition that causes diarrhoea and vomiting – they assumed the whole family would get it.
Sure enough, 17-month-old son Rio became ill the next day – but he seemed a little sicker than Remi, so Mrs Fowler took him to Sydney Children’s Hospital where doctors treated him for dehydration, before they were sent home.
However, the little boy’s condition only worsened – he was later placed on a drip for eight hours, but his body wouldn’t rehydrate and left doctors stumped when it effectively began to shut down.
He underwent surgery for what experts thought was a tumour, only to find out the mass they saw on the X-rays wasn’t a tumour at all – it was actually a blockage in Rio’s arteries which was cutting the blood supply to parts of his body.
Three days after he was hospitalised with gastro, the little boy had his leg amputated and sadly died of starvation 40 days later – when blood stopped flowing to his stomach.
Mr Fowler told Daily Mail Australia on Sunday that he does feel frustrated and angry sometimes because his son died from a condition so rare it still has no name, but he is eternally grateful the family had access to palliative care at Bear Cottage.
Rio seemed like a healthy child before he got a common stomach bug. Pictured with his mum Karen and older sister, Remi
Ryan Fowler (pictured left with Rio) said his oldest son seemed perfectly healthy before he got gastro
Bear Cottage is one of only three end-of-life facilities in Australia – there is one in Sydney, Brisbane and Melbourne, but the Fowlers want to change that.
‘I lost my mum when I was young and I’d been to hospices with her, but I never thought I’d be there with my son – I knew this was where he was going to die,’ he said.
‘We had so much care at Bear Cottage – they made us cups of tea when we didn’t even ask, they took our daughter to Wiggles concerts and had therapists talk to her, and basically did things with her we couldn’t do because of Rio’s condition.
‘We were able to operate as a family while Rio was so sick – they even have a dog who will go in and sit with a child and keep them comfort if they’re alone in a room.’
After Rio died in January 2018, his parents made a charity called Rio’s Legacy and started raising money to fund hospices for kids.
Rio’s health deteriorated quickly after he went to hospital with gastro. Rio is pictured with his mother, Karen
Rio had his leg amputated at just 17 months old. Doctors had never done that surgery on a baby before
‘There are only three here when there are over 50 in the UK, and I think it’s because kids dying isn’t spoken about – it’s a tough subject,’ Mr Fowler said.
‘The head of ICU at Sydney Children’s Hospital in Randwick told me companies will donate machines to help kids get better, but unfortunately that’s not always the case.
‘It sucks that my son was in that category, but Bear Cottage made such a difference to my family and other people in our position should have access to the same thing.’
Mr Fowler has type one diabetes – a chronic autoimmune condition where the body destroys insulin-producing cells in the pancreas – but continues to challenge his body and run huge distances to raise money for his charity.
The 40-year-old ran from Sydney to Melbourne in 2018, he then cycled from Adelaide to Sydney via Melbourne in 2019, and plans to run the Sydney City2Surf later this year.
Pictured: Rio with an amputated leg. He didn’t survive for long after his leg was removed
Pictured: Rio with his mum Karen, dad Ryan, and big sister Remi – before Rio got sick
‘It’s tough to run and ride with diabetes, but I do my best – it’s amazing what you can do when you’re inspired by your little boy like I am,’ he said.
‘He’d be about five now – he was my first little boy and I was looking forward to doing things with him, like riding a bike.
‘By doing this, I feel like I can still run and ride with him.’
When Mr Fowler found out that one family in need had to fly from Western Australia to Sydney to access end-of-life care for their child, he realised there was a severe need for more facilities in the country.
Through the charity, the family raised $600,000 to go towards the first palliative care house for children in WA.
Ryan Fowler (pictured) has diabetes, but continues to push his body to raise money for his charity
Pictured: Rio Fowler, before he got sick. Doctors still don’t have a name for his illness
When Rio was admitted to hospital for the third time with severe dehydration, doctors sent him straight to ICU when they realised his heartbeat was well over 228 beats per minute.
The average heartbeat for a child between one and three years’ old is between about 80 and 150 beats per minute.
Surgeons tried to work fast to figure out what was going on, and thought a mass on Rio’s chest X-ray was a tumour.
He was raced into a six-hour surgery, only to work out the mass wasn’t a tumour at all – it was a blockage in his arteries, which essentially stopped his blood flowing properly.
‘Every time they tried to get Rio’s blood pressure down, his arms and legs would change colour,’ Mr Fowler said.
‘His blood pressure was so high because his body was trying so hard to get blood pumping properly – the blood flow to his right leg in particular was so bad that his body made new veins.’
The Fowlers had another baby boy, Levi (pictured), after Rio passed away. They are pictured with Remi, who is now 8
Even with all the effort Rio’s little body was putting into keeping him alive, it wasn’t enough – his arteries were clogged so badly in some areas that there was no blood flow at all.
The following day – just three days after Rio was admitted to hospital with gastro – his right leg deteriorated to the point where it had to be amputated.
‘There was no blood flow to that leg at all, and there hadn’t been for a while – the doctors couldn’t believe he was walking around on it a few days earlier,’ Mr Fowler recalled.
Sadly, the little boy got gangrene on the remaining part of his leg – a potentially fatal condition which happens when the blood flow to a large area of tissue is cut off, causing healthy tissue to break down and die.
Surgeons had no choice but to give Rio a hindquarter amputation – where the entire leg is removed, along with part of the pelvis.
‘They’d never done a surgery like that on a kid before, and they’d never seen the arteries clog up like his,’ Mr Fowler said.
‘It progressed so quickly, and doctors eventually said his condition was life-limiting – I’d never heard that term before.’
Rio’s arteries were clotting at such an alarming rate there was nothing anyone could do to save him.
Levi is two and does not have the same condition his brother had. His parents said Rio’s condition was not genetic
His parents couldn’t take him home because he needed special equipment and he was on a lot of medication, so doctors suggested they go to Bear Cottage.
Rio’s death certificate says arterial vasculopathy – which means inflammation of the arteries, but Mr Fowler said experts had never seen anything like it in a person so young, and that condition alone isn’t a cause of death.
‘We had genetic testing and counselling and there are no genetic indicators at all,’ Mr Fowler said.
Their daughter Remi, who is now eight, was tested and cleared, and their youngest son Levi – who was born after Rio died – was tested, and he’s also fine.
Rio appeared happy and healthy before his sister came home with gastro and, while they’ll never know for sure, they believe that’s what triggered his artery collapse.
The only way the Fowlers can rationalise what happened to their eldest son is to believe he was born for a reason.
‘We’re Christian and our faith has helped us a lot to get through it and understand it the best we can.
‘Rio was a little trooper and I’m proud of the legacy he’s been able to give – I wish he was still here and I miss him – he fought so hard, and he was a gift to us.’
Source: Daily Mail