“I can’t feel my legs.” Five words that changed everything for seven-year-old Conan and his family.
The night before, Conan had mentioned over dinner that he had a sore back. He’d fallen over at school but, being an active, outgoing kid he’d got on with his day. His mum Dominique checked his back and gave him some pain relief before tucking him into bed.
Nothing prepared them for what the next day would bring.
Conan was sent to the children’s hospital for an urgent MRI where scans revealed Transverse Myelitis a rare neurological condition which affects the spinal cord.
Conan had damage in his spine from C5 to T10 and sadly, had no function below his belly button.
“It happened so fast,” Dominique said. “We had no idea symptoms could develop so rapidly. It was such a shock to see our normally outgoing sporty child lying there in hospital.”
Conan had five days of intravenous steroid treatment followed by a more aggressive form of treatment with five rounds of Plasma Exchange.
He spent 84 days in hospital – a world away from his friends, sports and having fun building things in the shed with his dad.
Every part of family life was turned on its head.
“Conan’s life has completely changed. He is now a T8 Paraplegic and has had to learn how to navigate learning to use a wheelchair as well as new daily routines, ” his mum said.
Dominique had to step away from her career to become Conan’s full-time carer, and dad Shamus became the sole income earner.
Amid the pain and heartache of hospital, Starlight helped create moments of joy and happiness for Conan and his family.
“I can’t imagine those 84 days in hospital without Starlight,” Dominique said. “The Starlight Express Room became Conan’s escape from the hard stuff - the place he felt most comfortable, where he wasn’t going to poked with needles or peppered with questions -he could just be Conan and have fun and that was invaluable to him and to us.”
Conan has a great sense of humour and always looks for the fun and positive in things. He loves computer games and being creative so in the Starlight Express Room, he found a place to still do the things he loved even when he was stuck in hospital.
“It was the perfect place for Conan to just be a kid, have fun and forget that his life as he knew it before had completely changed,” his mum said.
The Captain Starlights put on an early birthday celebration for Conan in the Starlight Express Room and sang him Happy Birthday which made his day.
Conan also loved a bit of friendly competition challenging the Captains to video games - and win or lose he always had a smile on his face!
The Captain Starlights also visited Conan on the ward shifting his focus away from all the scary parts of hospital and treatment.
“I’d been involved in donating toys to the Starlight Christmas appeal through my workplace, so knew of Starlight that way. But I never in a million years thought our family would be personally impacted by Starlight,” Dominique said.
Conan is now at home and has transitioned to community therapy and is working hard with his Exercise Physiologist and Physiotherapists. He’s determined to be as strong and independent as he can to live a full and active life. He’s been excited to return to school and be with his friends again.
Looking back on their time in hospital, Dominique said she can’t imagine the experience without those moments of fun and happiness helping them through the toughest times.
“We couldn’t have got through any of this without the Starlight Express Room and the Captain Starlights, and I say “we” because honestly, I ended up needing it as much as Conan did. The benefits of fun and laughter on a child’s wellbeing is everything. It reminds them that they’re still themselves despite the treatment. It keeps them going knowing that after they get through the hard part, there’s a fun and positive place waiting for them.”
