One minute five-year-old Beau was happily playing after school. The next, he had collapsed to the ground, unconscious.
Mum Kara recalls the shock seeing her little boy unresponsive.
“It all happened so fast. He came to and was taken by ambulance to the children’s hospital.”
Scans at the hospital revealed a large blood clot blocking the blood flow to Beau’s brain. The Neurologist confirmed Beau had suffered a major stroke and needed emergency surgery.
It would be 10 weeks before Beau would come from hospital.
Beau underwent multiple surgeries including a Thrombectomy to remove the blood clot. He then underwent Craniectomy to remove a large portion of his skull due to severe brain swelling and then two months later, a second Cranioplasty to reinsert his skull bone.
Complications arose that meant Beau endured a subsequent Cranioplasty- the first one was reabsorbed by his body- so he required an additional procedure taking a piece of skull from his “good side” to use on the “bad side.”
He also received Botox in his right arm and leg to assist in managing spasticity.
As a result of the stroke, Beau now has an Acquired Brain Injury (ABI), right side hemiplegia and Aphasia which affects speech and language.
During those agonising months in hospital, the family’s life was turned on its head.
Kara and dad Shane both stayed in ICU with Beau for the first two weeks. Once Beau was moved to the ward one parent always stayed while the other returned in the morning.
While trying to navigate the challenges of hospital, they also needed to care for their older son Zac.
“We had to make arrangements for Zac; thankfully we had family relocate to help out and try to keep things as “normal” as possible for him,” Shane said.
It was incredibly difficult for Beau to suddenly be confined to a hospital ward and not be out and about swimming, playing sports or being with his friends.
Since his stroke, Beau has had to relearn how to do everything - how to sit, eat, move and talk. With no movement in his right arm, he’s now learning to do everything with his left.
“Everyday tasks are more difficult, or sometimes not possible,” Shane explains. “The skull surgeries on top of his stroke recovery means he’s under strict physical restrictions, which is hard for such an active young boy. But we’re so proud of how he pushes on.”
While facing some of the toughest times imaginable, the family discovered Starlight.
“At first, we took our older son Zac to the Starlight Express Room to help break up the long days in hospital. But once Beau was feeling better and able to be out of his bed, he loved going there too.”
In the Starlight Express Room, Beau loved the gaming consoles, playing Jenga and card games with the Captain Starlights and never missed joining in bingo and the quizzes.
Kara says the Starlight Express Room gave them space to be together as a family.
“Visits to the Starlight Express Room became a daily occurrence and something our whole family could enjoy together. In the Starlight Express Room, you don't feel like you’re in hospital, which is so refreshing even if it’s only for a short while.”
When Beau was on the wards, the Captains brought fun, play and imagination helping to ease the pain and loneliness of his long hospital days.
Kara remembers the joy on Beau’s face when the Captain Starlights ‘turned his hospital bed into a pirate ship and he got to sail the seas and find treasure!’ Beau also loved tuning into Starlight TV and setting fun challenges for the Captains.
“Without the Starlight Express Room or the Captain Starlight visits on the ward, our hospital experience would have been very different. Having the Captains bring their positive energy and activities whilst stuck in the room was a huge help to passing the time.”
When Beau first came home from hospital, he still wasn’t able to go to school or play sport or ride his bike – which was a hard adjustment for the whole family.
“We’re an active family and Beau's stroke has meant we’ve had to make a lot of changes whilst he recovers. He can’t participate in life the way he could previously which has been very upsetting for him. He also tires easily and communicating is more difficult,” Shane said.
Beau still goes to hospital three times a week for intensive rehabilitation and his parents say they’re blown away by his resilience and determination.
Happily, Beau has just started slowly back at school a couple of mornings per week and loves seeing his friends again.
His mum explains there’s still a long road ahead, with ongoing therapy and life-long issues as a result of the stroke. But to help him focus on the future, Beau has the excitement of his Starlight Wish to look forward to. His wish is for a family holiday to the Gold Coast to visit all the theme parks. He’s counting down the days!
“Starlight brings us so much joy in hospital and we now have something positive to look forward to with Beau’s wish. Starlight helps sick kids to just be kids and have a break from the reality of hospital.”
