Twelve-year-old Willow is one in a million. One of a small group of kids worldwide to suffer from Chronic Recurrent Multifocal Osteomyelitis (CRMO) she’s even got the T-shirt to prove it!
Sadly though, life for kids with CRMO can be a series of painful and debilitating unknowns.
At eight years old, Willow was a bright and active young girl who’d been described as a “superstar of the future” in her sport.
But when some minor ankle pain turned into constant leg pain, followed by intermittent loss of function in her leg, Willow’s world started to crumble around her.
Describing it as “like watching a slow-motion train crash”, Willow’s parents Catherine and David struggled to find answers for their daughter.
“We just couldn’t figure it out,” says Catherine. “Nothing made sense. One minute she could walk and the next minute she couldn’t. We tried doctors, physios, everything, but no one could say what was wrong.”
After months of searching for relief, Willow’s parents organised a scan. What happened next would tip the young family’s lives upside down.
“Our greatest fear was that the scan would show nothing, and we’d still have no way to help her. Instead, late that night the radiologist called to say ‘get straight to the nearest hospital’.”
Willow’s scan showed significant bone changes and a large amount of inflammation in her left leg. She was immediately admitted to hospital, starting a painful and lengthy process to diagnose her condition.
“CRMO is a diagnosis of exclusion so there is no one test that says “you have CRMO”. It presents as other things, like a bacterial infection and bone cancer, so you have to rule out all of those. It’s such a long and traumatic process, and we had so many setbacks.” says Catherine.
Willow endured three surgeries in six weeks. A painful allergic reaction caused her to temporarily lose the use of her arm, and the day Willow was due to go home for the final time, she was heartbreakingly sent for repeat surgery instead.
Willow spent more than three months in a wheelchair, a month on IV antibiotics, and returned weekly to the hospital for testing.
The setbacks, the endless testing, and the uncertainty of the unknown took a heartbreaking toll on Willow’s mental health.
“Our little girl’s personality completely changed,” says Catherine. “She went from bubbly and happy to very angry, and highly anxious. She was convinced she was going to die and was afraid to go to sleep in case she never woke up. She also started to fight all the needles she had to have, so had to be held down or sedated to get them done.”
Amongst all the trauma and pain of her experience however, Captain Starlight was a shining light for Willow and her family.
“The Starlight Express Room was pure joy. The Captains made Willow feel seen and cared for, and provided the perfect distraction from what was happening to her medically. As a parent trying to keep everything going while our world was imploding, it was an absolute god-send.”
Willow loved to watch the Captains sing and dance, play board games, craft, and was highly competitive at the giant Connect Four!
For her older siblings Indie and Jasper, the Starlight Express Room was a great place to escape their worries and reconnect as a family. Their Mario-Kart battles were just like a home away from home!
As an outpatient, Willow insisted on visiting the Starlight Express Room before AND after every appointment! Captain Starlight was always there to brighten Willow’s smile as her tests continued.
Willow’s family are so thankful for the Starlight Express Room, and to all of those who support Starlight in helping sick kids and their families.
“For us, the Starlight Express Room was truly life changing. I genuinely don’t believe we could have kept Willow afloat if it wasn’t for the fun of Captain Starlight. It was her one and only happy place when she was missing out on everything else in her life. We will never be able to express our thanks for what the Captains did for us.”
