Most people take for granted walking and running without pain or difficulty, but for 17-year-old Sara Jane Giles, it takes a lot of effort to get her body to do what her mind tells it to. Giles has a form of osteogenesis imperfecta (OI), sometimes known as brittle bone disease. OI is a genetic disorder that causes bones to break easily. It's caused by a defect in the genes that produce type I collagen, a protein that helps make bones strong.

Through years of physical therapy and other medical care at Shriners Children’s Hospital, Giles will be walking in the Shriners Children’s Walk for Love fundraiser Sept. 21 to help other kids like her.

“I was diagnosed at age 5 or 6,” said Giles. “The years leading up to that I was breaking bones doing normal activities as a toddler. They couldn’t figure out what it was. They said I’d grow out of it.”

Giles said when she went to Shriners they had a lot of answers almost immediately. “They made the diagnosis. It was an amazing experience to know what was going on in my own body. I felt heard and supported. I was more than my disease.”

It took so long for a diagnosis, she said. “There were no physical features. They took an X-ray of my entire body and found a sign of OI in my skull.”

Giles said that she has met with specialists of every kind. “They don’t treat me as just a patient, but a person. Everyone who works at Shriners has made a personal connection with me. They know me for me. I’ve never been scared at an appointment because they always explain everything.”

One of the most difficult things about OI is not having your body match up with your mind, said Giles. “You want to join in but your body won’t follow. It was hard to sit on the sidelines while my friends were doing things so effortlessly. Chronic pain takes a toll on you.”

Since being diagnosed and receiving treatment at Shriners, Giles said her bone density has increased. “I’m able to do what I love without so much pain. I can live my daily life with less pain than when I was a child. Although it is still difficult and activities cause pain I’m at a place where it is manageable. I’m grateful that I am getting stronger every day.”

Giles is a senior at Farmington High School and a Student Body Officer for social media. “I also love basketball and softball. Social media gets me involved in all the events and I get to make fun posts. It keeps me busy. That’s what I’m interested in.”

The walk is part of the patient ambassador program, said Aubrey Gurney, marketing and communication specialist at Shriners Hospital. “It gives patients the opportunity to share their stories and Shriners’ mission. We have a roster of awesome kids we can call up.”

It’s the annual fundraiser that goes to the patient care at Shriners, she said. “We care for patients regardless of their ability to pay. Doctors go above and beyond.”

Last year, the walk raised more than $125,000, Gurney said. “It’s (Shriners) all funded through an endowment and generous donors. That’s how we’re able to provide care for our patients.”

“I’m so excited for the walk,” said Giles. “It brings the Shriners community together but it symbolizes a lot.”

Walking can be difficult, she said. “People take for granted being able to take small steps. The walk builds community and support. I’m honored to be a part of it. To walk for those who can’t is great.” 

This year’s Walk for Love will be held Sept. 21 at the Hogle Zoo from 8:30 a.m.-10:30 a.m. Everyone is welcome.