Rio’s Ride cycles into Very Special Kids for World Hospice Day

Ryan and Karen Fowler are on a mission help ease the heartache of other Australian families following the death of their toddler, Rio.

At just 16-months of age, Rio spent 40 days in hospital with what appeared to be gastro but the toddler rapidly became sicker, eventually being diagnosed with an extremely rare arterial condition which saw him lose circulation to his legs and kidneys, and eventually his stomach.

The couple were referred to Bear Cottage hospice in Sydney and are forever grateful for the support they received before and after Rio’s death.

Ryan, along with his brother, Chad, and friend, Lee, and followed by Karen and daughter Remy by car, are now almost half-way through a 1,900km cycle from Adelaide to Sydney, via Tasmania, to bring attention to the need for a children’s hospice in every state in Australia.

“The idea is that people in South Australia, the Northern Territory, Western Australia and Tasmania should also have somewhere to go in their toughest time,” Mr Fowler said.

Currently, there are only three children’s hospices in Australia – Very Special Kids in Victoria, Hummingbird House in Queensland and Bear Cottage in Sydney. In Perth, families and children are currently supported by not-for-profit organisation, Hannah’s House.

As part of World Hospice Day, Very Special Kids in Malvern welcomed Ryan and Karen to its children’s hospice for breakfast before they head off on the Melbourne to Yea leg of their 17-day ride.

Very Special Kids currently supports over 900 Victorian families by providing free access to respite and end-of-life care at Very Special Kids Hospice, as well as counselling and support services for the whole family.

It is 80 per cent self-funded and 20 per cent government funded. Melbourne mum, Kylie Poppins, knows first-hand how important Very Special Kids’ services are.

Her 11-year-old daughter, Steph, was diagnosed with mitochondrial disease in 2017, an incurable condition that is both regressive and unpredictable.

Very Special Kids provide counselling and support to the whole family and Steph recently had her first respite stay at the hospice just last weekend, giving Kylie and Steph’s brother, Robbie, some quality time together. Kylie faces the added challenges of caring for Steph, and supporting Robbie, on her own following the death of her husband two years ago.

Very Special Kids Chief Executive Officer Michael Wasley said Australia still has a long way to go to provide adequate hospice care in Australia.

“We are one of three children’s hospices in the country, but if you compare that to the 54 in the UK, it’s a huge difference. There’s still a significant unmet need of families we could be reaching,” he said.

Dr Jacqui Duc, Senior Medical Officer at Hummingbird House and Paediatric Palliative Care Staff Specialist, is also in Melbourne and met with the Fowler family and Very Special Kids staff, and children, for World Hospice Day.

Children’s hospice services help children with life-limiting illnesses who are not expected to reach adulthood, and provide emotional and psychosocial support at any time a family member needs.

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