'Without this place, I honestly don't know what our family would do'
The fight to save Allowah Presbyterian Children’s Hospital
Tucked into the leafy streets of Dundas Valley in Sydney’s northwest is an unassuming place that has changed the lives of hundreds of families – Allowah Presbyterian Children’s Hospital.
Adam Jordan’s family is among those touched by this unique hospital – the only hospital in NSW solely dedicated to caring for children with disabilities and complex medical needs.
“It really has changed our whole life,” Jordan tells Eternity.
“Before we had respite care through Allowah, my wife Bec and I were at breaking point. It sounds terrible, but we were almost at the point of looking for more permanent accommodation for our daughter Sophie. We were really struggling in the home just to have her here.”
Sophie, now 13, lives with a multitude of physical and mental challenges.
“Sophie cannot walk, talk or feed herself. She’s 100 per cent reliant on my wife and me,” Jordan explains.
“I can remember going to work and I’d be just nonstop worrying about her, and feeling so run down and tired. It was really hard to function.” – Adam Jordan
Emotional regulation is difficult for Sophie and she often has what Jordan describes as “meltdowns”.
“She also doesn’t sleep much either,” he adds. “She wakes up at midnight and she won’t go back to bed because she can’t comprehend that it’s nighttime. She thinks it’s 6am or 7am, time to get up.”
For Jordan, a paramedic, and his wife, a primary school teacher, the constant care for Sophie, combined with the lack of sleep, became untenable.
“I can remember going to work and I’d be just nonstop worrying about her, and feeling so run down and tired. It was really hard to function.”
Jordan says they tried various respite services in their local area on the central coast, north of Sydney, but didn’t feel much relief.
“We tried a couple of places where Sophie stayed for a night here and there, but it was nonstop worrying because it was just in a house and they didn’t have nurses there to administer her medication and look after any medical needs that she may have,” he says.
But then a friend, who also had a child with a disability, told him about Allowah.
A unique place of care
Allowah Presbyterian Children’s Hospital was founded 60 years ago to care for children with complex disabilities and health needs. It now serves about 120 families. As well as 44 inpatient beds, the hospital also provides a diverse range of outpatient disability support services. These include physiotherapy, speech pathology, occupational therapy, dietetics and mental health services. Significantly for carers, Allowah offers short-term or respite accommodation for children with disabilities from birth up to 18, as well as after-school care and holiday programs. And importantly for children with complex medical needs, at least one registered nurse is on-site and doctors are on call every day of the year.
For the past five years, Sophie has been staying at Allowah every weekend – from Thursday night to Sunday afternoon.
“It’s enabled us to keep Sophie in the home,” says Jordan about this respite care.
“From the CEO to the cleaner, they all treat the kids like they’re one of their own.” – Adam Jordan
“It has changed our whole life just having that bit of a break. And it’s also a break for Sophie too. She loves going there. Every staff member at Allowah that I’ve come across, from the CEO to the cleaner, they all treat the kids like they’re one of their own – just the love and care that they all share with the children there …
“They make it fun too. It’s colourful and they have music playing. They really make it feel like home. It’s not just like a place where they sort of babysit the kids when they get dropped off. It’s got a really good feel to it.”
Jordan says Sophie also enjoys connecting with other kids at Allowah, as well as different staff members. And she enjoys the activities, such as painting and drawing, and going on the swings in the playground.
“It’s a bit different to just being here with us. When it’s just Mum and Dad, like most kids, Sophie can get a bit bored or worked up, but down there she gets more stimulation.”
The available medical care at Allowah has also helped to put Jordan’s mind at ease.
“We know that when we drop her off, she’s safe, she’s cared for,” he says.
“It’s still challenging now, don’t get me wrong, but Allowah just enables us to have her on those other days and then enjoy the break and recharge the batteries.”
He adds: “We’ve gone around and looked at a couple of other respite facilities. Last year at Christmas, there were a couple of homes that opened up here [on the central coast]. Logistically, it would be a lot easier for us to drop or pick up Sophie from there, as they’re only 10 minutes away. But they just wouldn’t support Sophie’s needs like Allowah does. So even though it’s an hour’s drive, it’s worth it.”
One of the defining characteristics of Allowah’s care is its Christian ethos. Run by Jericho Road Social Services – the “mercy ministry arm” of the Presbyterian Church in NSW – Allowah aims to be “a place that seeks justice and shows mercy in Jesus’ name for children and their families.”
While Jordan is not a practising Christian, he has seen this faith in action at the hospital – through the care provided and kids church services held there.
“I’m all for this type of spiritual guidance … I’ve been down at Allowah before on Saturday mornings when they have had the choir there and there might be some prayers, and I think it’s good … I’m happy for Sophie to be around this type of good influence,” he says.
An uncertain future
Recently, genetic testing has linked Sophie to a rare condition that fewer than 200 children in the world have. Jordan says Sophie is likely to be one of only two children in Australia with the condition.
“Up until a year ago, [Sophie’s geneticist] had said that for a 13-year-old girl, there was not one more test that they could possibly do … But we found out a few months ago that Sophie has some small link to a syndrome called Jordan’s Syndrome, which is funny because it’s our surname as well.”
It results in significant intellectual disability, including an inability to speak, hypotonia (low muscle tone), delayed intellectual development and is linked to autism.
“My wife’s joined a Facebook group about this syndrome and is talking to other parents. There are still a lot of unknowns, like what her life expectancy will be … I think the oldest child living [with Jordan’s Syndrome] is about 23 or 24 at the moment,” Jordan explains.
Allowah’s future, much like Sophie’s, is also uncertain. The hospital has suffered significant financial losses during COVID because it has been unable to run programs from which it draws income. So the hospital is now petitioning Parliament for urgent funding to keep it afloat.
“I honestly don’t know what we would do if Alowah closed,” says Jordan. “It would have the biggest impact on our lives again. It would be terrible … It really is a unique place.”
However, near the end of his conversation with Eternity, Jordan points out a glimmer of hope, saying, “When Sophie was born, they told us that she wouldn’t make a year. Every year when we see her neurologist, he’s always dumbfounded that another year has passed and Sophie’s still here.”
Let’s pray that in the same way, after 60 years of caring for children like Sophie, Allowah also continues to endure into the future.