WHEN little Rio Fowler started to vomit and suffer with diarrhoea, his parents thought he just had a tummy bug.
Mum Karen and dad Ryan said their daughter who was in pre-school had gastro so thought he had caught it off her.
The 15-month-old had to be taken to A&E three times in the space of a week and his parents said they had never seen anything like it before.
Sadly, Rio's condition worsened and at just 17-months-old, he died from a rare terminal heart condition.
Ryan explained that Rio's tummy bug symptoms had accelerated the underlying issue, leading to his son's tragic death in January 2018.
When Rio was rushed to hospital forty days before his death, Ryan said his blood pressure had been extremely high and his heart was 'beating at 220'.
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In children 1-2 years-old, 80 to 130 beats per minute is a normal heart rate.
Medics were immediately concerned and Rio was moved from the emergency department to the intensive care unit.
Within the space of a couple of weeks, Rio had to have more than five operations, two of which meant he had to have two amputations on his leg.
His arteries failed to supply enough blood to all his major organs and it was then that his parents were told he had arterial malformations.
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Arterial malformations happen when a group of blood vessels in your body form wrong and this usually occurs during development before birth or shortly after.
Ryan said the family have been left 'numb' and have now set up 'Rio's Legacy' in order to honour their son and to help other families in need.
"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 told news.com.au.
Rio had been unable to stomach food and didn't eat for three weeks.
But even though Rio had a terminal illness, the family said he continued to inspire them with his smile and his fight.
What are arterial malformations?
Arterial malformations happen when a group of blood vessels in your body form incorrectly.
Most people who have the condition have no initial symptoms or issues and usually an issue is found when a patient is being treated for other conditions.
In little Rio's case – this was when he was being treated for gastro symptoms.
No one knows why the condition occurs, but some experts think it could be a genetic condition.
Sometimes the illness can reduce the amount of oxygen that gets into the brain and spinal cord.
This can then put pressure on the surrounding tissues.
It usually happens during development though birth or soon after.
Just before Christmas the family were told there was nothing doctors could do and their son was put into a children's hospice.
Ryan said it was a 'tough place to go', but that he would never be able to repay the staff at Bear Cottage at Manly.
"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", he added.
Rio died on January 2018 when his body shut down and his family said he fought all the way to the end.
Ryan said his son had a 'cheeky grin' and had loved playing with his sisters.
Since Rio's death, the family have raised over $600,000 which will help four children's hospices in Australia.
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With the funds the family wants to open more hospices so that other families can be together until the end.
Their fund has so far helped 367 families stay together by helping out with accommodation for parents.
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