When Paula and Mike welcomed their daughter Ellie in 2010, they sensed right away that something was different.
“She stopped growing at 32 weeks and was born at 37,” Paula explained. “She cried for the first year of her life, and nobody knew what was going on.”
At 18 months old, Ellie was diagnosed with Angelman Syndrome, a rare neurogenetic disorder that affects balance, movement, speech and development.
Now almost 15, Ellie is a loving, easygoing teen with a gentle spirit and a love for swimming, her sensory room and her dog, Waffle – who has become an unexpected hero in Ellie’s care. “He knows when she’s going to have a seizure,” Paula shared. “He lets me know when she’s not safe.”
Ellie’s medical journey has been incredibly complex. She’s been hospitalized multiple times for seizures and pneumonia and experienced a major regression that lasted eight months. “She couldn’t hold her head up, she couldn’t sit up… she was very weak,” Paula remembered. “We didn’t know if she would come back from that, but she did.”
Ellie’s health care team includes a neurologist, a speech-language pathologist, a physiotherapist and an occupational therapist.
“She’s got bilateral iris coloboma, so she’s visually impaired. She’s also autistic. But she is so happy,” Paula said.
Accessing the right support, however, hasn’t always been easy.
“We’ve travelled everywhere,” Paula said. “Kelowna, Calgary… we even lived in Ottawa for a while because we thought we’d find better services. But the winters were just too much – for Ellie and for us.”
Now, the family calls the Comox Valley home, and Paula and Mike have worked tirelessly to create a therapeutic, loving environment for Ellie. Their basement, where Ellie spends most of her time, has been transformed into a sensory playground.
“Most therapists say our basement is better equipped than some therapy centres,” Paula said. “But it used to be a struggle to get her down there. We were carrying her up and down the stairs multiple times a day.”
That’s where the Children's Health Foundation of Vancouver Island's Bear Essentials came in, supporting the family to purchase a stairlift for their basement staircase.
“It was a game-changer,” Paula said. “Ellie can now access her sensory room whenever she wants.”
The family has also received support from the program to purchase a specialized stroller for Ellie, and to help cover travel costs to the Canadian Centre for Development in Calgary – one of the only facilities equipped to meet Ellie’s rehabilitation needs. “There just isn’t anything like that here on the Island,” Paula said. “We do what we need to do to get her the therapy she needs.”
Support from Bear Essentials has made it possible for Ellie to continue accessing the spaces and therapies that bring her joy and stability. “We didn’t have to go through eight months of waiting in order to benefit from something,” Paula said. “We give Ellie everything we can. We use and use the equipment. And when she’s done, we donate it.”
Above all, Paula and Mike remain grounded in their love for Ellie and their pursuit of balance. “We’ve moved around a lot, tried to find the answer to life,” Paula says. “But as long as Ellie’s happy and healthy, I’m happy and healthy, too.”
Learn more about the Bear Essentials program and lend your support to Island children at islandkidsfirst.com