Digby’s story

Digby, was like any other little boy, loved riding his bike and playing with his trucks but a recurrent virus, trouble sleeping, and an intolerance of food rang alarm bells for his parents.

One-year-old Digby loves playing with his trucks and riding his bike, but at seven months he had recurrent viruses that he never seemed to recover from. He wouldn’t toleratefood, he wasn’t sleeping, and at times was inconsolable. As Mum Heidi put it “He just wasn’t his usual self.”

Digby was hospitalised in Toowoomba and given nutritional support and antibiotics for his infections, but his condition didn’t improve, and he was deteriorating. The decision was made to transfer Digby to Queensland Children’s Hospital. There he was given nutritional support and underwent many investigations to find the cause of his symptoms.

Digby was diagnosed with an auto-inflammatory disorder and immune deficiency called PLAID syndrome.

Digby’s family are fundraising to get Digby into a trial to begin research into his largely unknown condition. It was a difficult time for the whole family, with Mum Heidi and baby Digby away from Dad Cameron and Digby’s older sisters Ella and Ayla. There was additional stress because Heidi and Cameron simply didn’t have the answers to questions concerned family and friends were asking.

Mum, Heidi said about their time in hospital

“We were so grateful for the services provided by the Children’s Hospital Foundation, it definitely helped pass the days. The in-house entertainment, the cuddle carers, bedside play, and organised events were wonderful.”

Digby and his family are focussed on finding answers that will help treat Digby’s condition. Mum, Heidi said “We are now hoping that research can shed some  light onto his condition.”

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