After 21 months of construction and six years of planning, the $38.6 million Sandcastles (Boodja Mia) children’s hospice will begin welcoming families over the next few weeks.
Among them are Angus and Emma Nesbitt and their young son Ryan, who was diagnosed with a rare brain development disorder after experiencing his first medical episode at just three months old.
A few years ago, the Nesbitt family admitted their now seven-year-old son to hospital 20 times in one year, but the opening of WA’s first children’s hospice means they will finally have somewhere to access specialised care in peace.
Allan-Herndon-Dudley syndrome affects boys almost exclusively and is estimated to appear in one in 70,000 newborns. It can cause severe intellectual disability, limited speech and difficulties moving.
“With that comes cerebral palsy, epilepsy, dystonia and a few other complex medical conditions,” Mrs Nesbitt said.
“But he’s a happy little boy and he loves being out in the community and being included in everything, and Sandcastles really makes that possible for us.”
Surrounded by Swanbourne parkland and beach views, the seven-bed hospice includes three family suites, shared kitchen and dining spaces, lounge areas, playrooms, outdoor play spaces, a hydrotherapy pool and a dedicated area for teenagers.
Mrs Nesbitt said the most precious part for her family was being able to spend time together in a positive and accessible space, particularly with her other two children Andy, 9, and Ellie, 4.
“A few years ago, Ryan had about 20 (hospital) admissions in a 12-month duration, and a lot of that time we were at hospital, and it was a massive disruption to family life and trying to spend time with our other children, that was really difficult,” she said.
“Being able to have somewhere like here, it might be that we can be here instead of hospital and still have that time together as a family.
“I think the mental capacity and trying to organise just a simple outing is a lot for us ... being able to come here, everything’s set up, Ryan’s support needs are taken care of by the nurses and then we can focus on being a family.”
Eligible families will be able to access the facility free of charge, ranging from overnight respite to extended three-week stays.
Clinically operated by the Child and Adolescent Health Service, Sandcastles will provide specialist symptom management and end-of-life care, transitioning into family bereavement support.
“Connection with other families, exchanging stories, things that are going on in your life, what’s working, what’s not working, speaking to other families that are going through similar situations and things like that is absolutely beneficial,” Mrs Nesbitt said.
“Angus works full-time; it’s not very often that he gets to connect with other families as well, so yeah, I think it’s going to be great.”
Sandcastles is designed to offer a space between home and hospital. Mr Nesbitt said the beautiful location between bush and beach was a big part of that.
“It’s a very relaxed atmosphere. It makes it not feel like a clinical environment, it definitely puts everyone at ease,” he said.
“And to be honest, where it’s located here, you don’t even feel like you’re in Perth, you feel like you’ve actually stepped away for a minute.”
About 50 newly recruited nursing staff and almost 100 volunteers have completed specialist training ahead of Sandcastles’ opening, ready to support families such as the Nesbitts and enable them to focus on spending time together outside of medical worries.
Therapy black Labrador Bella will also reside at Sandcastles to provide additional comfort.
Works to develop the surrounding vacant land into a thriving community park with 7500 native trees are expected to be completed by the end of the year.
Family day visits and activity sessions will begin in the coming weeks.