By Dilvin Yasa
Call it mother’s intuition, but Georgie Bennett knew straight away that something wasn’t quite right with her firstborn, Holly.
“She wasn’t meeting any of her milestones; she didn’t roll when she was supposed to and she couldn’t sit like the other babies,” says Georgie. “Whenever we sought medical advice, however, we were simply reassured that since Holly was born at 33 weeks, she would just take a little longer to catch up.”
While Holly failed to flourish, Georgie continued her fight for answers and when her toddler was 18 months old, the Bennett family finally received a formal diagnosis for Holly: Phelan McDermid Syndrome, a rare genetic condition caused by a deletion or other structural change of the terminal end of chromosome 22 in the 22q13 region, or a disease-causing mutation of the SHANK3 gene.
Phelan McDermid Syndrome is so rare that when Holly, now 18, was diagnosed as a toddler, only 150 children worldwide had the condition. “I was told Holly would never walk, would never be verbal or be independent and that was incredibly difficult to hear,” Georgie says.
Those with Phelan McDermid Syndrome typically have moderate to severe developmental and intellectual impairment, approximately 75 per cent are diagnosed with an Autism Spectrum Disorder, while around 40 per cent develop seizures. Holly has all three, but also regresses whenever she is taught a new skill so that she forgets an old one. “She can also go 24 hours without so much as a nap,” adds Georgie. “It can be hard on everyone.”
For parents like Georgie and her husband Stephen, caring for a child with a life-limiting illness is often relentless. Careers come to an end, holidays long forgotten – an opportunity to have a simple family dinner out a mere dream.
The Bennetts preserved until 2015 when Holly had spinal surgery and her condition entered a sharp decline. “She went into surgery able to sit up but came out not even able to roll over,” says Georgie. “And although Bear Cottage had been talked about for years, it’s a terrifying thing to admit to yourself that your child needs palliative care or a respite service. We were just so exhausted by this stage that I realised the time had come and I made the call.”
Located in Sydney’s Manly, Bear Cottage is the only children’s hospice in New South Wales providing end of life care for children with terminal illness, as well as for kids with a life-limiting condition such as Holly’s. An initiative of The Children’s Hospital Westmead, the building is designed to feel like a fun family home with family suites, a sensory garden and multi-sensory room, multimedia/games room, spa and a parents’ retreat.
Not only do the team provide paediatric palliative care 24 hours a day, with specialists on hand to provide play, music and art therapy, counselling services as well as camps are offered for every member of the family. For the Bennetts, a place at Bear Cottage has meant enjoying small-but-meaningful pockets of respite.
“I really do wish we’d gone from the start; it’s been the best thing that could have happened for our family,” says Georgie who books the family in for week-long stays three to four times a year as well as individual sleepovers for Holly. “It means we can do the simple things – have a meal at a restaurant nearby or take a walk, relaxed in the knowledge that Holly is being well taken care of,” explains Georgie.
Dylan has been able to enjoy Bear Cottage’s siblings destination camps in Cairns and the Gold Coast, while younger sister Mackenzie, 13, has taken part in the siblings camps held onsite. “The kids love the productions and the camps, but I think what they get out of Bear Cottage is a chance to make friends with others who are in a similar situation to them and understand what that’s like.”
One of the biggest events on the Bear Cottage calendar is their end-of-year Christmas party, which, as with everything else in 2020, has been cancelled in light of the pandemic. “It’s been terribly disappointing; we usually have up to 450 people who attend the party and many of our bereaved families come back to catch up with us and other families,” says Bronwen Simmons, Bear Cottage Community Relations Manager. “We had so many families get in touch to express their sadness that the event was cancelled and an alternative solution was quickly born.”
Enter Bear Cottage’s Caravan of Care, a convoy which has been taking their annual Christmas party on the road and delivering presents to Bear Cottage families around New South Wales, including Gosford, Port Macquarie, Dubbo, Orange, Wollongong and Canberra. On the move since December 7, the team were due to wrap up in Canberra on December 23 but have had to postpone the last week of the road trip until after New Year in light of the recent COVID-19 outbreak.
Throughout the duration of the trip (now including January), the Caravan of Care will take Bear Cottage to 279 families and the team are also making toy drops to local hospitals along the way, including Manning Base Hospital and Armidale Hospital. “The reaction to our convoy has been incredible,” says Bronwen, who describes scenes where children have put welcome signs on front doors and chalk drawings on driveways.
“It was day after day of tears and laughter; people realise they haven’t been forgotten and that we’re always going to be there - even at the toughest of times.”
One family to benefit were the Bennetts, with the convoy dropping by last week. “They came with a stack of presents to place under the tree and time to stop, chat and spread Christmas cheer,” says Georgie. “It was a way of bringing back a little normality into our lives and I think that’s something all Bear Cottage families could do with, COVID-19 or not.”
For further information about Bear Cottage, visit Bear Cottage.
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Dilvin Yasa is a freelance writer.