I wish I may, I wish I might ...
The Australian Women's Weekly|Christmas 2021
The world changed irrevocably over the past two years, but for critically ill children and their families, the pandemic was just another challenge. Fortunately, those who bring happiness and hope didn’t change; they worked even harder.
GENEVIEVE GANNON

Sarah Pearce’s pregnancy was perfectly smooth so the doctors said it was safe to have her baby at the small hospital near her home in the Blue Mountains. But after her little girl, Anabela, arrived, they quickly realised something was wrong. “She was in a critical condition from the minute she was born. They didn’t think she’d survive the night,” Sarah says. Anabela was rushed to Sydney Children’s Hospital, Randwick, where she underwent surgery at just 48 hours old. Over the following weeks, in a humidicrib under the guardianship of a green knitted bear, she slowly grew stronger, but she was diagnosed with spina bifida, tethered cord syndrome, scoliosis and congenital birth anomalies.

“It was a lot to take in,” says Sarah. “When we left hospital, I was given four months of appointments.”

Sarah had planned to raise her daughter near her family in the Blue Mountains, but Anabela’s medical needs meant that wasn’t possible. So, she moved into a tiny apartment in Sydney’s east.

“It was an easy decision, but it was also very hard because it meant I didn’t have my parents and I didn’t have my brother and sister. It was quite scary moving into an area where we were alone,” she says. She didn’t feel alone for long, however. Sarah and Anabela spent so much time in hospital the nurses, doctors and ward nannies all became akin to family. And for Anabela, there were special friends who helped her be brave during her hospital visits: the Captain Starlights.

“There’s Captain Side-pony, Captain Freckles, Captain Kitty. They’ve been with her since she was 48 hours old in the ICU,” says Sarah. “They were there through everything. The captains bring that sunshine smile to the kids when they’re scared. They take that fear away. They bring activity packs with presents in them. Anabela calls them her bravery awards.”

Anabela is now eight and loves horses and playing with her cat, Cupcake. She wants to go camping so she can toast marshmallows. She’s small but mighty. She and Sarah sometimes have difficult conversations about ignoring kids who laugh at her, and she wants to host her own YouTube show: “So I can show people it’s okay to be who you are if you look like me. I want them to feel proud of themselves.”

She has spirit, Sarah says proudly. But surgery is frightening for anyone, and in her short life, Anabela has had 11 major operations. As she’s grown, so has her list of diagnoses. In 2019, Anabela underwent vascular surgery, and in 2020, she had spinal cord surgery. As she recovered, Anabela’s pediatrician decided she deserved an extra special bravery award, and she was referred for a Starlight Wish.

“A Starlight Wish is a unique, positive experience,” Starlight Children’s Foundation CEO Louise Baxter says. “The children create a wish, which often involves the family, so they’re then responsible for this amazing experience.”

The Starlight team suggested Anabela visit the Gold Coast theme parks, but just as they began planning, the pandemic arrived.

Riley’s wish

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