At just five, Theo has met lots of cool characters. From Bluey and Santa to a giant fluffy rabbit and of course, Captain Starlight.
While he’s faced complex health conditions his whole life, Theo finds joy all around him. His mum Victora says he’s the happiest, most curious and bubbly kid imaginable.
Theo was born with VACTERL Syndrome – an extremely rare genetic condition characterised by a combination of birth defects that affect multiple parts of the body.
Heartbreakingly, little Theo had his first surgery on the day he was born. It would be three long months before Victoria could bring her baby boy home.
“During our long stay in neonatal intensive care, we found out that Theo had a list of issues including two holes in the heart, a lung condition, was deaf in his left ear, duplex kidney, tethered spine, tracheomalacia and an abnormal spleen,” Victoria explained.
Since then, Theo has had long hospital stays, countless invasive procedures and time away from friends and family.
He has needed multitude of surgeries including on his heart and spine as well as feeding tubes, colostomy procedures, and aortopexy and subclavian bypass.
The stress and worry of every procedure take its toll and Victoria said their lives revolve around hospital and medical care.
“My life has completely changed. I had to stop work for the first two years of Theo’s life and now only work part-time to be there for all of Theo’s appointments and needs,” she said.
The hardest part for Theo has been missing out on so many things other kids his age are doing.
But thankfully in the Starlight Express Room, Theo discovered a place that was filled with all the childhood fun he’d been missing.
In the Starlight Express Room, Theo could laugh, play with cars, dance around with the Captain Starlights and just be a kid. He also loved requesting all his favourite songs.
“Theo still raves about seeing Zootopia 2 in the Starlight Express Room,” Victoria laughs. “Hospital would’ve been much more dull without Starlight.”
The Captains also visited Theo on the hospital wards keeping him happy and entertained on his toughest days.
Pleasingly, Victoria says that Theo’s condition is currently stable. He’s becoming more independent and his speech has come a long way in the last six months. The family have also welcomed baby Isabelle and Theo is a proud big brother!
“While things have slowed a little, there’s always something happening, but for the most part we’re in a maintenance phase.”
“Theo would’ve struggled with all his hospital visits without the fun of Captain Starlight. It has a huge impact as it helps kids to focus on the positives versus the negatives.”
