Finding cures for children's genetic diseases

Josh's Story


Before the age of one, baby Josh fought the battle of his life—brain cancer. When Josh was just 4 months old, his mum, Kylie, noticed he wasn’t feeding properly and his nappies were dry. Concerned that something wasn’t quite right, she took him to hospital.

They learnt Josh’s head circumference was equivalent to that of an 18-month-old child due to a buildup of spinal fluid. He was then transferred to a larger hospital where an ultrasound confirmed a blockage in his head—prompting doctors to administer an emergency scan.

"It was a public holiday so the MRI team weren't in. But the doctors were so concerned they called the team in to do a scan immediately," Kylie said. Following the scan, Kylie was given the life-changing news.

“I will never forget being told that Josh had a tumour the size of a mandarin in the middle of his head. The doctors said that if I had waited until the next day to have Josh checked out, my little boy wouldn't have made it," she said.
Josh had to immediately undergo surgery to relieve the pressure in his head, while his parents were told he may not survive. Thankfully the operation was a success and Josh is now four years old.

In his short life, Josh has endured seven surgeries over nine months. But it doesn’t end there—he still has many challenges ahead of him. Because of his cancer, Josh has cerebral palsy, epilepsy, a delay in communication and was told he may never walk unaided. But Josh is a little fighter and he has defied the odds. He started walking and continues to make progress every day.

He was also diagnosed with Level 3 Autism, which means he has severe deficits in verbal and nonverbal social communication skills, and minimal response in social situations.

Kylie said, “He gets so frustrated because he can’t speak, but he knows what he wants to say. We are learning sign language now to better communicate and we use an iPad app that talks for him.”

Kylie-Catterick-and-son,-Josh.jpg A big milestone for Josh was being enrolled in kinder class in a mainstream school.

When asked how she feels about his diagnosis, Kylie sums it up perfectly — “it’s just who Josh is, an inspiration and a blessing who is very much loved."

"Josh is simply a joy in our lives,” she added.

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