Bus Loving Four-Year-Old with Prader-Willi Syndrome Dies Unexpectedly

According to a story from CTV Vancouver Island News, a charming young child known affectionately as ‘bus boy’ died in his sleep on Saturday, January 27th.

Dominic Orr was only four years old. The youngster was given his nickname because of his gleeful reaction to the sight of passing buses. While the precise cause of his death has yet to be determined, Dominic was born with Prader-Willi syndrome, which affected his ability to move and speak normally.
Prader-Willi syndrome is a genetic disorder that is caused by a specific set of genes that do not function as they should. Signs begin almost immediately, and infants with the disease develop slowly, feed poorly, and have weak muscles.

Although it is a genetic disorder, the condition is not inherited but is caused by the loss of chromosome fifteen from the father. Potential risk factors are still unknown. In childhood, people with the syndrome experience delays in intellectual development, sleep excessively, delayed puberty, extreme flexibility, near constant hunger (which often leads to obesity and diabetes), and poor coordination. Many adults have below average intelligence and are infertile. Mental and behavior problems are also common. There is no cure, with treatment focusing on reducing symptom severity. To learn more about this condition, click here.

Sleep disorders are another common symptom in Prader-Willi syndrome, and it was likely a sleep related complication the resulted in the boy’s early death. Dominic first became a local celebrity after being featured on a local news story that covered his love of buses. He was even invited to visit the BC Transit headquarters to check out the buses up close, and briefly drove one of the vehicles. Although his parents Stephanie and Adam are still devastated with grief about the boy’s passing, his passion for life and delight at an everyday object than can seem mundane to many people can serve as inspiration for others. His ability to appreciate buses and his eager and passionate smile touched the lives of many.

Family friends helped the parents by launching a GoFundMe campaign in order to alleviate the financial burden and funeral expenses for Dominic.

Have you suffered a loss at the hands of rare disease? Share your stories, thoughts, and hopes, with the Patient Worthy community.

Share this post

Share on facebook
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email