NSW’s only children’s hospice, Bear Cottage at Manly, helps families like Jessica Garcia’s
Bear Cottage’s reason for existence — as a hospice for terminally ill kids — is immeasurably sad but the caring staff ensure the facility itself is not a place of sadness but of hope, love and creating special memories.
NSW
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Hearing their baby girl would likely not make it to her 10th birthday should have been the hardest thing for parents Sara and Patrick Garcia to hear.
But the southwestern Sydney parents were then asked to make an agonising choice – start end-of-life preparations for their tiny daughter Jessica, or embark on a longer journey by treating the symptoms of her devastating condition.
In the end, through their shock and grief, they chose life.
It’s been a hard road. Jessica is one of only 11 children in the world living with a genetic metabolic disorder called congenital disorder of glycosylation type IIB.
The neurodegenerative condition causes a number of complications, including seizures, and has left the now three-year-old with severe developmental delay and respiratory problems.
Jessica is immunocompromised and has hypotonia – which means her arms and legs hang limply by her sides and she has little head control.
“It’s been a long journey with Jessica,” Sara says. “She was born in May 2020 at 30 weeks (gestation) and was placed in the neonatal intensive care unit at Royal Women’s Hospital, before she was moved to Sydney Children’s Hospital, Randwick, at 36 weeks.
“Yet at around 42 weeks she was still not breathing or feeding properly and we saw countless specialists and she underwent so many tests.
“She was finally diagnosed with CDG IIB … and as far as we know she’s the only child in Australia with the condition. There’s around 6000 rare conditions, so we were lucky to get a diagnosis at least. But it also came as a massive shock.
“Because it’s so rare we don’t know what to expect, we don’t know what her life expectancy is. Doctors said it could be a year, it could be seven years at the most, looking at the cases around the world.
“But we made the choice to treat the symptoms, to give her the best quality of life she can have in the time that she has.”
Jessica suffers several seizures most days, she is placed on a bipap machine at night for her sleep apnoea, is fed through a feeding tube in her stomach and has to undergo weekly immunoglobulin therapy at the hospital.
It’s a full-time job to care for her, so Patrick quit his job while Sara assists in between her full-time work – which she does from home – and they both also care for their nine-year-old son, Liam.
“It’s changed our lives completely — we’ve never been exposed to anything like this before, we didn’t know what it meant to be peg-fed or what a bipap machine was,” Sara says. “It was a steep learning curve.”
There to help the family navigate the cruel condition has been a team of specialists and allied health professionals from the Sydney Children’s Hospital Network.
Then there’s Bear Cottage – a home away from home for families with children with life-limiting conditions.
The only children’s hospice in NSW – and one of just three in Australia — offers support, respite and end-of-life care for children who will likely not live till adulthood.
And while its reason for existence is immeasurably sad, the caring staff ensure that the facility itself is not a place of sadness but rather one of light, laughter and love.
A space where kids can forget about sickness for a while, and where their emotionally and physically exhausted parents can get some much-needed respite.
“We can’t begin to understand the level of emotional and physical exhaustion and trauma these parents have to deal with,” nursing unit manager Philly Smith says.
“We offer them the opportunity to stop, have a break and look after themselves for a change.
“Here they have someone else to share the care of their child — and that can be hard for parents who have never let anyone else look after them, who are used to caring for them 24/7.
“At first many can’t rest, they can’t stop. They often haven’t stopped in years and it’s hard, for instance, to sleep all night when you haven’t done so for years.
“But over time you see them let the staff take over more and more of their care and they start to trust them. And that’s a wonderful thing.
“It’s our absolute privilege to care for these families — our tagline is ‘life is for living’ and that’s what we try and show.
“These children are going to die at some stage and we can’t stop that, but if we can make their journey — and their family’s lives — a little bit easier, then we’ve done our job.
“It’s a happy place, even though sad things happen here.”
What is Bear Cottage?
An initiative of the children’s hospital, the Manly hospice was established entirely through community support at a cost of $10m and opened its doors in May 2001.
Up to eight families can stay at a time; spending quality time with their children, going on outings or taking part in activities onsite like art, play and music therapy.
There’s visits from clown doctors and other entertainers; there’s also two four-legged friends in Beau and Henry the therapy dogs.
Specialists and allied health professionals care for the children’s medical and treatment needs, while social workers talk to families about the emotional, social, spiritual and practical issues arising in their child’s care.
Importantly, there’s the chance for families to share their journeys with those who will best understand.
“They can meet with families in similar situations,” Smith says.
“The journey may be different – their child has a different diagnosis, they’re a different age – but a lot of the experiences they have are very similar.
“So they get a lot of comfort out of talking to each other. They are often able to discuss things they can’t discuss with anyone else.”
For Sara, Patrick and Liam, this has been one of the benefits of Bear Cottage.
The facility also gives the family the chance to enjoy each other’s company while Jessica’s needs are taken care of — and it gives them the chance to enjoy her too.
“We can stop for a while, we can catch the smile she gives to her brother Liam, we can see her enjoy a warm bubble bath,” Sara says.
“She faces so many challenges but she’s really gentle and calm. She shows her enjoyment of the small things.
“For Liam too, it’s nice to meet other families like his — other children with siblings with rare conditions. It’s nice for us too — to feel like we’re not alone.
“And it helps us feel like we made the right choice — seeing her smile makes it all worth it.”
How has Bear Cottage changed?
While many things stay the same at Bear Cottage, some change.
Medical research and technological advances mean some conditions are no longer life-limiting, while they also have to tackle newly diagnosed conditions that most people have never heard of.
“We care for children with a variety of conditions — with cancer, respiratory, cardiac or neurological conditions,” Smith says.
“But as treatment has changed, some conditions, like muscular dystrophy and cystic fibrosis, are no longer considered life limiting and so we don’t see as many children with those.”
Most families leave Bear Cottage refreshed; some, tragically, will leave without their child.
“We offer up to four weeks of booked respite, but end-of-life admissions are open-ended,” Smith says.
“We offer palliative care to children and support families through those days which are the worst of their life.
“We support them to separate slowly from their deceased child and offer help with siblings, and with the funeral and ongoing support with bereavement.
“We’re with families for the long run.”
Bear Cottage receives some government funding but continues to rely on the support of the community to fund its vital work.
Its annual Superhero Week — held this year from July 22-29 — aims to raise $250,000.
Individuals and businesses can donate directly, and schools and workplaces can hold “superhero days” to raise funds.
“All the children who come through our doors are superheroes in our eyes, as are our parents,” Smith says.
“Superhero week not only helps us raise funds, but it raises awareness about what we do — so families know where they can seek support.”
Visit superheroweek.com.au to donate and find out other ways to help.
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Originally published as NSW’s only children’s hospice, Bear Cottage at Manly, helps families like Jessica Garcia’s
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