This is Jye’s story. Told by his Mum.
Jye is 10 years old and has Juvenile dermatomyositis. It eats your muscles and your immune system makes you weak.
He was diagnosed in March 2016.
He went off food.
On Christmas Day, I thought he was just excited. He woke up with a rash across his nose. We thought he might could be allergic to zinc sunscreen.
He saw a doctor in January and a paediatrician in March who recommended he go to hospital.
We took him to Sydney Children’s Hospital, Randwick, and by the time they got there he couldn’t move.
He couldn’t sit up, he couldn’t walk, he couldn’t eat.
We stayed in Hospital for a week.
His immune system was attacking everything in his body.
Dr Davinder worked on him for a week; he had a big dose of steroids and chemotherapy.
Since then, we have been coming to Sydney every fortnight.
Once Jye started to get monthly infusions he started to improve. Wollongong Hospital teamed up with Sydney Children’s Hospital, so we don’t have to come in as often. He gets his infusions in Wollongong now.
Recently, Jye played in the final of the Corrinal Cougars and won and now he does swimming, surfing, rugby, drag and tag; he might even take up boxing.
There’s a 1 in 3 million chance of getting this condition – who would have thought it would get Jye?