Photographer offers sick youth a different reality through inspiring images
Published Wednesday, May 28, 2014 7:06PM EDT
This is a story about inspiration, hope, love, and generosity.
Zane and Luke may not look like teenagers, but they are 15- and 17-years-old respectively. Don't let their size take away from how much they love life.
The pair were born with a progressive degenerative bone disorder called MPS-4, or morquio syndrome. It is a rare form of dwarfism.
Luke and Zane will never grow more than three feet tall. Only three thousand people in the world have it.
Every week, the family travels two hours from Goderich, Ont., to Toronto's Sick Kids Hospital, to be part of a new medical trial that has dramatically decreased the pair's chronic pain and may give them many more years to live.
The drug being used in the trial is called Vimizen and its treatment could cost up to $1 million a year. The family is hoping and waiting for its approval.
When CTV Toronto first met the teens, they were not undergoing any treatments or doing much travelling.
Rather, the boys were in the city to have their picture taken by local photographer Shawn van Daele.
He created Drawing Hope Project to inspire children living with serious health conditions that anything is possible.
Every picture starts with the imagination of a child. Van Daele asks the kids to first draw him a picture of their wish. Then, he uses these drawings along with the boys photographs to create a magical portrait.
The editing process takes about eight hours.
Van Daele dedicates two days to each family. And he does it all for free.
"To me, it is better than any paycheque -- being able to go out and do this with the things that I am able to do," he told CTV Toronto.
A picture may say a thousand words, but these portraits have given families so much more.