Hillsboro resident Jordyn Valdez wants to do gymnastics, swimming and dancing, but will never get to experience any of them.

By the age of 7, Jordyn, now 12, had lost her ability to walk, move around and even comb her hair. In 2007 this bright seventh-grader, who attends Five Oaks Middle School in Beaverton, was diagnosed with a rare form of muscular dystrophy caused by a spontaneous gene mutation.

Emery-Dreifuss Muscular Dystrophy is a degenerative disease affecting the voluntary muscles.

Last Tuesday, May 26, Valdez and 11 other “heroes” who have shown immense strength and optimism in the face of a serious or terminal illness were honored at the Children’s Cancer Association’s 12th annual Celebration Of Courage event at the Oregon Museum of Science and Industry in Portland.

The children were selected by staff members from the 5,000-plus kids who received services from the CCA, a Portland-based nonprofit, over the past year.

“Our mission at CCA is to prescribe joy so we can create transformative moments of joy for sick kids, teens and their families,” said Abby Guyer, a CCA vice president. “We recognize that sometimes medicine just isn’t enough and that every child deserves a long, wonderful life and at the very least, a short wonderful life.”

The event began with introductions and awarding of medals to each “hero.” Then came a dove release spectacle and a reception, where CCA founder Regina Ellis released the first “guiding spirit dove.” Each child was then instructed to set their own dove free before 50 others followed to signify the 50 states where the organization has been active.

According to the American Childhood Cancer Organization, one in every 285 children will be diagnosed with cancer before age 20 — but the CCA’s focus is not on finding a cure. It strives to grant immediate joy to the children and their families, both locally and nationally, through its programs, according to its website.

Programs involve the healing power of music, the opportunity to stay at a beach house in Pacific City at no cost, friendship throughout treatment and other resources.

Ellis, who lost her daughter to cancer many years ago, founded the CCA 20 years ago while sitting at her kitchen table with eight other people. At that meeting she decided to transform the support she received to a larger realm of support for thousands of families. Now the CCA serves 14,000 kids locally and provides help in all 50 states.

Jordyn, who has undergone countless tests and painful surgeries — including a spinal fusion where two metal rods were inserted to straighten her spine — is one of the recipients of CCA’s care.

The Valdez family moved to Hillsboro two years ago to augment their daughter’s medical care. They were more than pleased to become part of the CCA in the summer of 2014.

“I remember my first response was, ‘Well she doesn’t have cancer,’ because I assumed (they only helped kids with cancer),” said Ana Valdez, Jordyn’s mother. “After learning about the organization and realizing they help kids with any kind of medical difficulty, I was really surprised. It’s easy to not notice a rare disease.”

One of the services the CCA provided was $500 for the family to buy their daughter a laptop to do her homework on, watch videos and listen to music.

“When everything else was failing, the music helped,” her mother said.

Aside from the music, Jordyn added she is very grateful for the medal she earned because her younger brother has won six medals for gymnastics — a sport she would have seen herself participating in if she did not have muscular dystrophy.

The family appreciates what the CCA has done for them and hopes to eventually give back by volunteering. Although the CCA provides “amazing” help, Ana Valdez said, she’d like to see more done for others with similar physical illnesses like her daughter: “There’s not much out there, and that needs to change.”

Jordyn believes she’s a “different person” than she would be if she didn’t have muscular dystrophy.

“I think I would probably judge people more, because being on the other side of judgment … makes you less likely to do it to other people,” she said.