CONSTANT DREAD

A TOWNSVILLE boy is only one of 200 known Australians diagnosed with a rare condition that caused him to have seizures up to 170 times a day, leaving his mother fearing for the worst.

Henry Dray, 6, was diagnosed with Dup15q, a genetic condition that is a duplication of material on the 15th chromosome.

The impacts on Henry have left him non-verbal, with a significant intellectual impairment, refractory seizures and poor mobility.

Mum Lindsay Dray said the fear of finding her son dead was “constantly” at the back of her mind.

“There’s always the sudden unexpected death in epilepsy, that’s always a concern for me that I’m going to wake up one morning and he might have seized in the night,” she said.

“It’s the first thing I think of when I wake up in the morning if I haven’t already heard him through the baby monitor.

“At worst he was having 170 drop seizures a day, basically every two minutes he was having a seizure.”

Henry was initially diagnosed with cerebral palsy and autism spectrum disorder, but further consultation revealed the true extent of his condition.

“It’s very challenging with the onset of the seizures, he needs constant monitoring,” Ms Dray said.

“One of us always has to be with Henry, day-to-day tasks like cooking dinner has to be done when both of us are here.”

The Federal Government launched the first National Strategic Action Plan for Rare Diseases on Wednesday, which Ms Dray said would benefit families across Australia as awareness and support for people living with rare diseases and their carers is increased.

William Dray, 9, came up with the idea to start selling his drawings on Facebook, to help raise money for an organisation supporting people who share the same condition as his brother.

“I raise money Dup15q Australia so for they can provide more gear for people like Henry,” he said.

“Drawing is my hobby. I feel like I can express my emotions … we can’t understand him in his way, but he can understand us in his own way.”

Rare Disease Day is held on the last day of February, aiming to raise awareness for people living with uncommon genetic conditions.