How the Starlight Express Room gave Jack hope.
Like lots of brothers, Jack and Sam love to joke around together and share a passion for sport. Jack's an intelligent and witty kid who's mature beyond his 10 years.
"Jack's an incredibly resilient child who's climbed back to his feet time and time again after being knocked for six by his medical issues," his mum, Christine said.
Jack was just five when he suffered a severe head injury and was subsequently diagnosed with Post-Concussion Syndrome (PCS). Sadly, the family was soon to face more devastating news about Jack's condition.
Christine recalls the moment vividly. "We were seeing the Neurologist about Jack's PCS so never expected to hear that Jack also had a Complex Deep-Brain Arteriovenous Malformation (AVM)," she said.
The diagnosis meant there were abnormal connections in Jack's brain and he was at risk of a life-threating major bleed that could strike at any time.
Jack's AVM was ruled inoperable and high-risk, meaning he was likely to suffer a major bleed on the brain before he turned ten. Sadly, that prediction proved tragically true.
One evening, Jack complained of a headache that got progressively worse. By morning he was vomiting, disoriented and having spasms.
Within hours, a CT scan revealed the family's worst fears. Jack's AVM had resulted in a deep brain bleed. He was rushed to Monash Children's Hospital. Christine said it was so frightening.
I thought he was leaving us. I thought, that after four years, the day we'd feared the most was here.Christine, Jack's mum
Jack had emergency neurosurgery while his mum, dad and brother waited helplessly. "He was hooked up to a host of machines and all we could do was sit and watch the brain fluid slowly drip down the tube inserted in his skull," Christine said.
Jack remained in hospital and began his slow recovery. It was during this time that Starlight entered the family's world.
While Jack was confined to bed, Captain Starlight dropped by the ward to entertain him with fun games and activities.
When Jack was finally allowed to get up out of bed he was fearful and reluctant to move. The Starlight Express Room gave Jack the motivation to start moving again. Jack wanted to go and play with his brother and escape the reality of being in hospital.
Christine said the boys loved the Starlight Express Room and the Captains were so kind and funny. "They took the seriousness out of the situation and helped the boys get past what they'd been through," she said.
Because of his illness, Jack misses out on so much of his childhood. He's never attended school full-time and was devastated when he had to give up all the sports he loved to play. Christine said she doesn't know how they'd have coped without the bright moments Starlight has given them.
From Christmas parties, to the soccer game where Jack smiled for the first time in months, to getting to see his first ever game of rugby, Starlight has lifted us out of our isolation and given us all some fun.Christine, Jack's mum
Unfortunately, Jack's hospital stays are far from over. At his 10th birthday party, he suffered another bleed and was rushed back to hospital. Thankfully, he found refuge in the Starlight Express Room where he made new friends and could take a break from being the sick kid.
While the family live with constant stress and anxiety, Christine said they try to make life as normal as possible for Jack and Sam. They are eternally grateful for the ongoing support that has helped sustain them through their unimaginable pain and sadness.
Starlight helped pulled Jack out of some very dark times when all he wanted to do was shut the world out.Christine, Jack's mum
And to Starlight supporters, she said: "Thank you for giving us strength to keep up the fight. But most of all, you give us the gift to see our children be children. To smile, to laugh, to live and to dream."
To help fund the new Starlight Express Room at Monash Children's Hospital to help kids like Jack, please get in touch with Louise Baxter, at email@example.com.
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