The family of an Edmonton boy with a rare and deadly disease that causes him to age rapidly say they are determined to ensure he lives life to the fullest.
Five-year-old Alex Whitford suffers from progeria, a disease that halts his growth and speeds up his aging. The disease affects only a few hundred children in the world.
Alex weighs only 21 lbs., and fights aches and pains all over his body. He handles his Ninja Turtle toys with arthritic hands, and must constantly undergo testing on his heart, hearing and eyes.
Alex’s grandmother, Dory Whitford, says she’s been told her grandson is the only child in Canada with progeria, after Ontario man Devin Scullion passed away at age 20 earlier this year.
“When he has his appointments, I think it makes me more aware of that, but usually, he’s just like any other boy,” Dory told CTV Edmonton. “I treat him just the same.”
But Alex’s family tries not to dwell on his condition.
“I don’t think about the aging and what could happen,” Dory said. It’s easier just to take it day by day and enjoy him now.”
His pediatrician, Dr. Lyle McGonigle, says children with progeria are at higher risk of heart attacks and strokes. They usually only live into their teen years, which is why he tells Alex and his family to enjoy the time they have now.
“He’s a sweet boy, he’s intelligent, bright, and needs to live the very best life he can live,” McGonigle told CTV Edmonton. “And we will help his grandmother, who is raising him, achieve that.”
A friend of the family has launched a GoFundMe campaign, raising money to offset Alex’s growing medical costs.
Dory said Alex is a happy little boy who rarely asks about his size or his increasing ailments. His main concern: When he gets to start Grade 1.
“He’s my superhero,” Dory Whitford said.
With a report by CTV Edmonton’s Carmen Leibel
