Charli was 12 months old when her parents heard the words they did not expect: spastic/dystonic quadriplegic cerebral palsy.
“It was such a shock,” her mum, Cassandra, remembers. “She’d passed all her six-month milestones but then at 10 months, we noticed she wasn’t rolling over or sitting up properly. We saw a peadiatrician to work out why she wasn’t quite getting there but we didn’t suspect anything serious.”
An MRI showed white matter loss on Charli’s brain, consistent with her diagnosis.
“Suddenly we were in this world of specialists, therapy, and uncertainty. Doctors told us, ‘We don’t know what her future will be – you’ll just have to wait and see.’ That was really hard to hear.”
“We also faced financial struggles given the ongoing costs of therapy, equipment and house and car modifications, with only my husband’s wage as I had to give up work to take care of Charli.”
Charli is now 9 years old, and while she will require lifelong support for her complex needs, she faces the world with a bright smile and a creative spirit.
“She’s been through so much but she’s still such a happy little soul,” her mum says proudly. “She loves reading, writing her own stories, painting, being outdoors and hanging out with her friends.”
But being included in everyday childhood experiences has always been a challenge.
“Charli is quite limited in where she can go when she leaves the house. Her friends will often have playdates and birthday parties at the beach. It’s a safe little bay, but it’s completely inaccessible for Charli as neither her walker nor wheelchair can go on the sand. The wheels get stuck, every bump is painful, it just isn’t possible,” Cassandra explains.
“She already feels segregated from the community because of her disability so seeing her constantly missing out is really tough.”
When the family’s NDIS application for a $10,000 Hippocampe all-terrain beach wheelchair was rejected, Charli’s Occupational Therapist suggested reaching out to Variety for a mobility equipment grant.
When a grant for $5000 towards the beach wheelchair was approved, the family was overjoyed.
“It was incredible. There’s no way we could have afforded it on our own, without Variety’s generous support,” said Cassandra.
“The first time we used it, Charli was squealing with delight. She could get right down onto the sand and into the water with her friends and her confidence just went through the roof.”
“The wheels can change to allow for accessing coastal tracks, so it’s not only ideal in the summer months but all year round. Charli can explore bush trails with her little brother Hugo and go to places that were impossible before. Hugo loves sitting on her lap while they zoom along. They giggle together the whole way. It makes us feel like a normal family again.”
The Hippocampe comes at a time of enormous challenge for the family. Last year, Charli underwent major surgery on her calves and hamstrings, leaving her in a wheelchair and leg straps at home for months. Just weeks later, Cassandra was diagnosed with stage 4 ovarian and breast cancer.
“It was devastating,” said Cassandra. “I’m the main carer for Charli and Hugo so it’s taken a huge toll on all of us, but Charli’s resilience continues to shine through.”
“She’s faced so much uncertainty in her nine years and sometimes she asks, ‘Why me?’ But she never lets it stop her.”
The Hippocampe has given the whole family a chance to reclaim joy, and their gratitude is immense.
“Inclusion is everything,” Cassandra said. “When your child can’t join in, they do feel different. The Hippocampe has opened up Charli’s world. It gives her freedom and fun with her friends and her family. That’s life-changing.”
“We’re so thankful to Variety and everyone who supports them. This chair doesn’t just help Charli, it helps us as a family. It lets us share experiences, make memories, and spend quality time together. There is no greater gift.”