Halftime at a football game usually means a toilet break, snack stock up and enjoying the entertainment. However, this Sunday at the GIANTS versus Hawthorn AFL match, halftime is about heart and helping others when they need it most.

Putting foot to the field, Ryan Fowler will start a long, hard eight-day run during Sunday’s halftime to raise awareness and funds for children with life-limiting conditions. The founder of Rio’s Legacy will take off from Manuka Oval and run over 300km, crossing the finish line after joining supporters in Sydney’s City2Surf on Sunday 11 August.

A recent partnership sees Rio’s Legacy supported by the GIANTS Foundation and Mounties Care Group and $3 million closer to their goal of building Australia’s fourth children’s hospice.

“In Australia, we only have three hospices who look after families with a life-limiting condition, whereas in the UK there’s over 54, and in America there’s 8,500. Based on our population, we should have at least 16, so there is a big need out there,” says Mr Fowler.

The hospice, to be named Mounties Care Cottage, is earmarked for Western Sydney and will provide support for people of the area as well as those in Western New South Wales and Canberra. Building Mounties Care Cottage has a price tag of $30 million, but Mr Fowler believes it is achievable with the help of government and community support. After all, the reason they are doing it couldn’t be more worthwhile.

“These kids are fearfully and wonderfully made. My son couldn’t eat before he passed away, but he was still smiling. These kids can’t run, they can’t do anything, but they laugh every day. They don’t know what is going to happen in the next five minutes, or the next day. So, the least I can do is put my body on the line to run for these kids and run for my son.”

As a father who has been there, Mr Fowler believes there needs to be more centres of support for families experiencing the decline of a child. The last few months of his young son Rio’s life were spent at The Bear Cottage in Manly, an experience the Fowlers will be forever grateful for.

“When we first got there, Rio had a bit of a difficult trip getting there. The first thing the volunteer said to my wife wasn’t about medication or what he needed, she just said ‘How do you have your tea?’” says Mr Fowler.

He says along with support and help to navigate the tricky moments, the cottage supported them with a culmination of little things that allowed them to be a family in those last months. During the hospital stay, it was always one parent or the other, and his sister couldn’t visit, At the cottage, the family was able to sleep together, and Rio’s grandparents were able to join them for his last Christmas.

“He was dying, and that was the worst thing you can ever go through. My daughter was four years old having to watch her brother go through this, but she has nothing but fond memories because they did activities for her, supported her, and she got to meet other siblings. That is priceless, what they gave my boy and my family.”

“It’s not easy talking about sick kids, let alone children who aren’t going to survive but they’re human beings, they deserve the best and these families deserve the best.”

In November 2017, beautiful, kind-hearted and cheeky one-year-old Rio went to the emergency department for the third time with recurring gastro, a trip from which he didn’t return home.

Never getting a formal diagnosis, Rio had the best doctors stumped by something none of them had seen before in a child. They were able to surmise that Rio had an Arterial Vasculopathy disease, his arteries weren’t able to supply enough blood to where it needed to be.

Undergoing two amputations on the same leg for a suspected tumour which turned out to be that the blood flow had been completely cut off, Rio remained stoic.

“Doctors were amazed when we showed videos of the week before we went to the hospital, he was weight-bearing on that leg. They were like ‘How is he doing that? There is no blood going down there.’”

“It is awesome to be inspired by your 18-month-old, who is showing so much strength and resilience to go through that and have no blood going down one of his legs, yet he can still weight bear on it,” smiles Mr Fowler.

It reached a time when there was nothing else the doctors and the hospital could do for Rio and his family.

“When they tell you your son is not going to survive, as a father, you’re like, okay, what am I going to do here? It cuts the legs right out from under you.”

During their stay at The Bear Cottage, they met families who had been visiting the cottage for five or more years, some having to come from out of state. Mr Fowler knew they were only one family, but he also knew something had to change.

“How does anyone else get this help? How does anyone else get this support when they need it? There is nothing worse, as a father than watching your son just trying to live. My wife, my daughter had to go through all that and there are so many families that have to do it.”

Eventually wanting to get to the goal of at least 16 children’s hospices with one in every state, Mr Fowler knows the task ahead is enormous. Small donations add up, as does continuing to talk about the need for these respite centres, that’s the mission of Rio’s Legacy, and the upcoming event is just one of the many ways they will reach the goal.

The days will be cold and the journey long, but Mr Fowler won’t forget his giant reason for running.

“My son is always with me; he is always in my heart. I have met so many of these beautiful kids who don’t know if they are going to live the next day or not. If I am struggling one day because it is cold, I can persevere.”

Support Rio’s Legacy and Ryan’s GIANT Reason to Run; here

Canberra Daily would love to hear from you about a story idea in the Canberra and surrounding region. Click here to submit a news tip.