Ryan and Karen Fowler are still struggling to believe that their little boy is gone. Little Rio was bright, strong, ready to take on the world – he accomplished a lot in his short life.
“He was rearing to go in life,” Ryan, a Sydney based dad, told Kidspot. “He loved playing with his big sister, Remy.”
At 16-months-old, Rio had experienced a few unusual symptoms in his short life, but nothing that had caused too much concern.
One of his legs was slightly shorter than the other and he had a few unusual birthmarks and discolourations. But he was given the all clear by his doctors after he’d had multiple tests and thorough investigations to rule out any serious problems. His parents thought they had no reason to worry about him, until November last year.
A run of the mill virus with devastating results
“My daughter has had gastro before, but Rio had never caught it,” Ryan said.
“Then one Friday afternoon, she came home from preschool with gastro and she is pretty resilient, just threw up once and slept for a few hours and then she was fine. “
“Rio got sick and he was so unwell we ended up taking him to the emergency department that night.”
Rio was cleared by the hospital to go home when it was determined that he was able to keep fluids down, but a week later he was back in emergency.
“We were in the hospital, in the ICU, Rio’s blood pressure shot up to 225/150, his heart rate was up to 214 beats per minute,” Ryan recalled.
It was terrifying for Ryan and Karen, they were watching their son quickly deteriorate, and one seemed to have any idea why.
“Rio’s heart was dilating, and the doctor was very frank with us, he told us, we’re just trying to get Rio to live through the night, and we’re unsure if he’s going to make it. ”
“We were just… overwhelmed by that,” Ryan said. “I started contacting family and friends and just saying, can you pray? Because I don’t know if my boy is going to live.
“A week earlier he was healthy, he was playing, and now we were saying our goodbyes.”
Starting a rollercoaster ride
Rio did make it through the night, but he was still extremely unwell and the doctors in the ICU still weren’t able to figure out exactly what was wrong with him.
The next few weeks were a rollercoaster of uncertain diagnoses. During his time in hospital Rio underwent four major surgeries, including two amputations on his leg, the first at the thigh, the second even higher up, Finally, the specialists realised the little boy was facing a very unusual condition, arterial vasculopathy disease. This meant that Rio’s arteries were struggling to supply enough blood to all his major organs and vessels around his body. It is usually a condition found in older people, and the family say that the specialists were baffled to see a case like this in someone so young.
Rio’s case was sadly terminal. There was nothing that anyone could do to cure him, and so his devastated parents could only spend as much time with him as possible before he passed away.
A very special place
“Just before Christmas, we heard about Bear Cottage and we ended up taking Rio there,” Ryan said. “I’d never heard of it, but the people there do such amazing work. ”
Bear Cottage is one of only two children’s hospices in Australia. It is a very special place that’s dedicated to caring for children with life-limiting conditions and their families. For Rio and his family, those last few weeks spent together at Bear Cottage meant so much.
“It meant Remy could be with us and we could spend our last Christmas together,” Karen, Rio’s mum, told Kidspot. “Remy was also able to meet other kids like her who had really sick siblings, and this helped her feel less isolated, it gave her someone to talk to.”
“We were with Rio on his battle, but sadly, his brave fight came to an end on the 15th of January,” Ryan said.
As the family face the unthinkable loss of their precious boy, they are pouring their efforts into helping other families who may find themselves in the same position.
Ryan and Karen are raising money now for the children’s hospital ICU as well as for Bear Cottage so that it can continue to operate well into the future and provide essential assistance to families in their darkest times.
This arcticle was published on Kidspot.