LITTLE more than 18 months ago, Timothy Riley was a happy, active young man.
But a diagnosis of leukodystrophy - a rare degenerative disease that affects around one in 175,000 people worldwide - brought all that crashing down.
The disease affects the nervous system, stripping people of their ability to perform everyday functions, eventually resulting in death.
Despite being wheelchair-bound and fed by a nasal gastric tube, it was impossible to wipe the smile from Timothy's face on Saturday, as more than 200 people from the Darling Downs biking community headed to Esk to celebrate his 16th birthday.
Timothy was treated to a motorbike ride as part of his birthday celebrations - one of the many highlights on the day.
The community also organised bands on the day and donated money toward Timothy's medical expenses.
"The weekend was absolutely amazing... To see the joy on his face meant absolutely everything to me. It's a great milestone that we never thought we would actually manage to get to,” Timothy's mum Pauline Pesak said.
"I just want to say a huge thank you from the bottom of my heart. Without the support of everyone involved with us I don't think it would be very possible to live and cope with.
Mrs Pesak said if there was one thing people could do - it would be to observe and remember Rare Disease Day, held on February 28 each year. She hoped there would one day be a cure for leukodystrophy.
"It's pretty scary stuff to see your child dwindle in front of you, and to know that you're going to have to potentially bury your own child because of how cruel this disease is... It just rips everything away from you,” she said.