REAL LIFE: “We were told our son had a rare condition and it was terminal”
After her son passed away, Karen Fowler turned her greatest loss into a new purpose.
Our little boy Rio was a perfectly healthy little boy until he wasn’t.
Rio got very sick after a recurring bought of gastro. Our daughter Remi brought the gastro bug from school, but Rio never seemed to get better. We went to the hospital three times before the doctors finally admitted Rio. Call it a mum’s intuition, I just knew something wasn’t right.
By that stage Rio was shutting down and doctors in the ICU had no idea what was going to happen or if he was going to survive the night. Ryan and I immediately found out just how fragile the human body is.
For four to five weeks, Ryan and I took turns caring for Rio in the hospital while our extended family looked after Rio’s older sister Remi at home.
As a mum, all I wanted to do was look after the family. But we were separated during the most challenging and heartbreaking time all while trying to make life-changing decisions about Rio’s health.
After 40 nights in hospital the doctors declared that Rio had a one-off condition without a name, extremely rare, and one that would result in arterial vasculopathy and be terminal. We were completely devastated and had nowhere to turn.
We didn’t think this at the time, but we were fortunate to be offered a space at Bear Cottage, one of only three children’s hospices in Australia. Initially we didn’t want to take up the offer, thinking hospice care was giving up on our little boy. But we soon learned the true value of a children’s hospice.
We received specialist care for Rio, with paediatricians, 24/7 nursing care and allied health support which meant we were able to be a family again until our little Rio passed away in January 2018.
End of life hospice care isn’t about checking your child’s vitals 24/7, it’s about making them as comfortable as possible which was a hard pill to swallow at first. But the care we received was above and beyond.
I remember a nurse coming to me one day and saying that she had arranged a hairdresser to visit Bear Cottage so I could have a cut, wash and blow dry just meters away from my sick child. Being cared for in that moment was priceless and I didn’t miss a precious second with my little boy.
After losing Rio, we were lost. It wasn’t until Ryan suggested that we find our new purpose, that we started Rio’s Legacy – a charity to advocate and raise money to support other Australian families to care for children with a life-limiting or terminal illness like Rio.
To raise awareness and generate much needed funds in the aim of building Australia’s fourth children’s hospice in Western Sydney, Ryan is now halfway through his run/ride challenge from Brisbane to Oran Park (September 18 – October 3). Ryan’s pushing through to raise as much awareness as we can and we’re following along his journey.
If you can support, please help us build Australia’s fourth children’s hospice in Western Sydney during Ryan’s Brisbane to Sydney Challenge 23′. Donate here today 👣
