The first thing Hayden Lee notices when he opens his eyes in the morning is the pain.
His parents carry him from his bed to the couch, where he’ll lie until he feels ready to move his arms and legs.
If he can muster up the fortitude, they’ll take him to school and place him in his chair, while his classmates run around and play in the moments before the bell rings.
“His teacher tells us that’s when he takes a deep breath and then struggles to stand up,” said Hayden’s mom, Susan Lee.
Hayden suffers from Blau syndrome, a condition that affects skin, joints and eyes. The 4-year-old was honored Sunday at Denver’s Walk to Cure Arthritis in Washington Park.
For Hayden, whose family lives in Summit County, the most brutal aspect of the disorder is the arthritis it causes, which results in joint pain, swelling and immobilization.
The arthritis targets every joint in his arms and legs, and doctors have yet to discover a cure.
“It’s heartbreaking,” Susan Lee said. “As a parent, you want to help you’re kid, and there’s nothing you can do.”
About 50 people came to support Hayden at the walk, including his teachers, doctors and family. Clara Lin, a pediatric rheumatologist at Children’s Hospital Colorado, first met Hayden when he was only a year old.
“His arthritis was awful,” she said. “His hand was basically a big ball. He was so tiny, and he wasn’t gaining weight. It was shocking.”
Hayden’s parents began noticing symptoms when he was 9 months old. It took more than two years to identify what was causing his arthritis.
“It started with fevers and red eyes and joint swelling,” said Hayden’s dad, Simeon Lee. “So we went on a quest for a diagnosis.”
But the diagnosis of Blau syndrome was bittersweet for his parents and his doctors.
“The thing with Blau’s and arthritis is there’s no cure — there’s only treatments,” Simeon said. “Some people don’t respond to them, Hayden included.”
Blau syndrome is a rare condition, he said, noting that it affects only about 50 people in the United States.
To manage his symptoms, Hayden takes immunosuppressants, continual steroids, growth hormones and monthly biologic infusions. But so far, nothing has given him relief.
“We’re still on a quest to find something that works,” Simeon Lee said. “So getting a diagnosis was kind of bittersweet. It didn’t bring us any closer. It didn’t provide an answer.”
Despite the pain Hayden experiences daily, his parents say the spirited pre-schooler loves to play with his 7-year-old brother, Henry, and his friends from Frisco Elementary School.
“He just gets on with it,” Simeon Lee said. “Everybody complains about stuff, but he just gets on with it.”
Katy Canada: 303-954-1043, kcanada@denverpost.com or @KatySusanna
