HOCKINSON — Ten-year-old John Charles had seen the collection of Nike shoes, designed by kids his age, on display at Doernbecher Children’s Hospital while receiving medical care at the Portland hospital. But he never imagined he would one day be among the patient-designers.
This fall, however, the Doernbecher Freestyle program will unveil a Nike collection designed by the Hockinson boy and those created by five other patients in the Portland area.
“It’s cool,” John said. “It feels good doing it.”
The partnership between Nike and the Oregon Health & Science University children’s hospital has featured 71 patients and raised more than $11 million since its inception in 2003.
The good news that John was selected for the program came several months after a surprising medical diagnosis responsible for sending John to Doernbecher.
A little over a year ago, Mary and Tony Charles began noticing John was more tired than normal, falling asleep after school and awaking with slight fevers. He was lethargic, struggling to keep up on the soccer field and feeling like he didn’t have the energy to play. And the already tall, slender boy was losing weight and had no appetite.
“I wasn’t feeling good,” John said. “It was so bad, that I didn’t feel like I was having any fun doing sports.”
Those symptoms continued for a couple of months, but Mary chalked it up to normal kid stuff.
“Kids get sick, get fevers, sleep a lot when they’re growing,” Mary said.
But near July 4, 2014, John was running a temperature of 104 degrees. Mary suspected strep throat; John even had the telltale white spots in his throat. But the strep test came back negative at an urgent care clinic.
John had a follow-up appointment with his pediatrician, and his blood work showed that John’s inflammatory markers were elevated. John was sent to Doernbecher Children’s Hospital, where a gastroenterologist ran additional tests and determined John had Crohn’s disease.
Crohn’s disease is an inflammatory bowel disease that causes inflammation of the lining of the digestive tract, according to the Mayo Clinic. The inflammation often spreads deep into the layers of affected bowel tissue and can be both painful and debilitating, causing abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition. The disease can also have life-threatening complications, according to the Mayo Clinic.
There is no cure.
John spent four days in Doernbecher after his diagnosis, undergoing more tests and being pumped with nutrients. The ulcers in John’s digestive tract had been preventing his body from absorbing nutrients from food. He was put on steroids to stop the inflammation.
John went home with prescriptions for various medications and a doctor’s recommendation to avoid foods that are difficult to digest. Other than a minor relapse in September while transitioning medications, John has returned to his normal self. He gained weight and his energy returned.
John takes a handful of medications every day — a combination of anti-inflammatories and immune suppressants totaling 11 pills.
“The meds have kept things really stable,” Mary Charles said.
In November, while at Doernbecher for a checkup, John’s doctor told him about the Doernbecher Freestyle program and asked if she could nominate him to be a patient designer. John agreed.
A few months later, his mother got a phone call from the program.
“She runs outside, ‘John, you’re gonna get to design your own shoe!’ ” John recalled. “I was just so excited.”
Earlier this spring, John got to work designing his line.
First, he met with the organizers at Doernbecher who gave John templates to color. Then, he met with his own 10-person design team at Nike’s headquarters near Beaverton, Ore.
John designed a pair of shoes, a hat and a hoodie. All aspects of the designs — including colors, themes and shoe style — are kept secret until the big unveil at the Doernbecher Freestyle auction on Oct. 23.
John said he used his experience in the hospital with Crohn’s disease and some of his favorite things for inspiration.
“They’re very personal, in that sense,” Tony Charles said of his son’s designs.
A couple of weeks ago, John saw his completed shoe and hoodie designs for the first time. He had creative freedom over every detail of the line, down to the plastic pieces on the ends of the shoe laces.
“It’s really overwhelming,” John said of the experience.
While John and his family had seen the shoes on display at the hospital, they never appreciated the size and reach of the program, Mary said. Bids for each patient-designer’s set can range from $8,000 to $25,000 at the auction, she said. After the auction, the designs will go on sale online and in stores nationwide.
“I appreciate now just how big it is, how important it is,” Mary Charles said. “The millions of dollars that are raised and the number of people around the world who know about it — it’s much larger than I imagined.”
