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For Karen and Ryan Fowler, spending the last few weeks of their 17-month-old son Rio's life at a hospice was crucial to their grieving.
Rio was diagnosed as terminally ill in December last year and died in January at Bear Cottage in Manly.
With only three children's hospices available in Australia, the family has made it their mission to see this changed.
"My last days and moments with him, I could give him that as a mum, because of Bear Cottage. These places are more precious than we realise. Having a lot of places like Bear Cottage is important," Rio's Mum Karen said.
“Rio was initially admitted into hospital with suspected gastroenteritis…. it wasn't until later they said his condition was progressive and he was terminal,” Dad Ryan said.
Rio was diagnosed with an Arterial Vasculopathy disease / condition. Rio’s arteries failed to supply enough blood to all his major organs and the blood vessels around his body.
Despite major aggressive medical intervention, the family was eventually told that his condition would progress and his body would progressively shut down.
“If it wasn’t for Bear Cottage to support my son, wife, daughter and I, I don’t know how we would have survived the passing of young Rio in January.”
In NSW, Bear Cottage in Manly is currently the only children's hospice available that helps care for children with life-limiting conditions and their families.
Bronwen Simmons, the Community Relations Manager for Bear Cottage, said over the past couple of years there has been a growth in people trying to access their services.
“Many years ago in the early days we were able to offer the family more respite care...we now run at almost a hundred percent capacity,” Ms Simmons said.
No parent should ever have to bury their child
Claudia Virdun, who has worked in specialist palliative care in the clinical and policy environment, said having only one children’s hospice available in NSW is problematic.
“Manly where Bear Cottage is, is not easily accessible for the greater western sydney area and rural families also have limited access,” Mrs Virdun said.
Ryan said having only three hospices with eight beds in each, means only a maximum of twenty four kids can be taken into care across Australia which forces families to be turned away.
“We heard of a family from Western Australia who were trying to fly to NSW but there was no space and we were like there’s got to be more spaces for people to go to,” Ryan said.
This was the spark for the parents to start Rio’s Legacy, with the aim of building more children’s hospices and raise awareness.
“There's a lot of kids who don’t have diagnosis and they're still passing away and their families are going through these hideous processes watching their children die slowly, and it’s really taxing emotionally, physically, and financially for parents,” Karen said.
This is despite the NSW Government allocating funding for a young-adult hospice last year, which it has not yet been built.
“The NSW Government has committed $2 million every year to Big Bear Cottage, a hospice for adolescents and young adults that will give children with life-limiting illnesses a place to go when they turn 18,” a spokesperson for NSW Health said.
For Rio’s parents, they hope to see one hospice for children available in each state.
Ryan will be running later this year to from Melbourne to Sydney to help raise money. To donate or find out more about Rio’s Legacy click here