“At the time I thought it meant you’d given up,” Mr Fowler said.

Just before Christmas in 2017 Rio was suffering symptoms of arterial vasculopathy, which meant his blood was unable to be pumped around his body. The doctors never discovered the cause of the disease.

Karen Fowler and her son Rio at pediatric palliative care Bear Cottage. Picture: Supplied

The family moved into Bear Cottage in Manly, the only palliative care facility for children in the state, where Rio lived out his final days until his death in January 2018.

“They just put us back together … it allowed us to be a family again,” Mr Fowler said.

Since then, the family, through their foundation Rio’s Legacy have fought to establish more facilities dedicated to children with life-limiting conditions.

“There are over 28,000 children in Australia with life-limiting conditions, but we only have three hospices,” Mr Fowler said.

As a result, the state’s second hospice, dedicated to paediatric palliative care will finally be built in Western Sydney at The Children’s Hospital at Westmead. It will be the fourth such centre in the country.

Karen and Ryan Fowler with their two remaining children Remy (L) and Levi. Picture: Supplied

The new hospice, to be called Mounties Care Cottage has been jointly funded by a $13 million contribution from The Mounties Group and $20 million from the Minns government. Planning and design for the facility will begin later this year.

The new hospice will provide space for families with direct private access to gardens and play areas. It will also connect with other paediatric health services across the hospital network.

Health Minister Ryan Park said the new facility was not just important for Western Sydney but would be used by families all over the state.

“This hospice in Western Sydney will be an important part of this service network for children and families, offering increased choice for families across the state during what will be a very difficult time in their lives,” he said.

Mounties Group chief executive Dale Hunt said the new hospice was designed to support those in the community going through the most difficult times in their lives.

“Mounties Care Cottage will truly make a difference in these families’ lives by providing a peaceful environment where they can stay together as they go through these extremely difficult moments, close to the local creature comforts they love,” he said.

Posted in the Daily Telegraph 29th April. Story link below:

Rio Fowler’s legacy to build the state’s second paediatric hospice at Westmead | Daily Telegraph