By Mamta Lulla
Rylan Pederson is a normal 12-year-old boy in Spruce Grove — he attends school, spends time with his family and he enjoys sports.
As much as he would like to play hockey and other sports like basketball, he cannot, due to a rare condition called Fibrous Dysplasia. According to fibrousdysplasia.org, the disease is characterized by areas of abnormal growth in one or many bones.
Rylan lives with the fear of being pushed or falling down – be it hallways in school or on ice or snow banks. His bones are fragile and could easily break.
His mom, Jocelyn, doesn’t like the fact that she can’t help his son. It breaks her heart, she said.
She does what she can – which is raising awareness and funding for more research on the condition.
“As a mom, it’s difficult to see him in pain because as parents, all we want to do is fix things for our children and I can’t fix this for him,” she said.
As for Rylan, he turns to his guitar when he’s feeling blue.
“It soothes me, just listening to the sound,” he said.
The guitar keeps the focus on positives in life – which are things he can do rather than what he can’t do. The can-do attitude of the Pederson family has raised $14,000 with Rylan’s music. All the money goes towards research of the condition.
Jocelyn is a mom on a mission.
She has completed her paperwork and is hoping to become the board member of the Fibrous Dysplasia Foundation in the U.S. She is connected to a small online community – people whose lives have been touched by the condition.
As Rylan is getting older and hitting puberty, his bones are developing and his bone structure is going through changes.
“So there’s bone growth and what fibrous bone is doing is taking over his good bone – it grows and expands causing him pain and fear of breaks,” said Jocelyn.
She explained his bones aren’t as strong as ours.
Hope keeps the family going. They hope someday there will be enough research and a cure for the condition.
“The only thing I can do is try to change his future by awareness and funding for research which is what fuels my fire because it’s the only thing I can do,” she said.
To learn more about Rylan’s story or to donate visit him online at www.rylansrhythms.com.