Young warrior in the fight of his life

The past few years haven’t been easy for Sally Wilbur and her son, 13-year-old Daniel Rapada—but the boy plans to “walk” in his eighth grade graduation in June.

Daniel was in the sixth grade when he was diagnosed with severe aplastic anemia, a condition that has left him fighting for his life.

“He’s a survivor. Everyone refers to him as ‘our little warrior’ because he’s gone through so much in two years,” his mom said.

Severe aplastic anemia is a rare bone marrow disease that leaves a person deficient in all three types of blood cells. It causes a lack of red cells to carry oxygen, white cells to fight infection and platelets, which are the blood’s clotting factor.

The disease struck out of nowhere.

In the weeks before Daniel was taken to Children’s Hospital to get his blood tested, his mother didn’t know what to make of the large, ugly bruises that inexplicably began to cover his body.

“I actually thought he was being bullied,” Wilbur said. “I couldn’t figure it out. I kept asking every day, ‘It’s okay, you can tell me.’”

She and Daniel have a close relationship, Wilbur said, so when he couldn’t explain the bruises, it worried her.

But to make matters more confusing, Daniel wasn’t showing any other signs of illness, she said, so she didn’t take him to the doctor right away because she didn’t suspect a medical problem.

He wasn’t fatigued after a full day’s schedule at school with study halls and basketball practices, she said.

The final straw came when his friends were alarmed after seeing him spitting blood in a bathroom sink because his gums were bleeding. That afternoon, she made an appointment with the Swinomish Indian Health Clinic.

As Wilbur described her son’s struggles during a brief visit home on Wednesday, several people stopped by to hug and say hello to Daniel, including Sarah Wilborn, the Physician Assistant who first recognized his problem at the Swinomish clinic. As his mother talked, Daniel was drawing and coloring, but periodically added to his mother’s story.

Wilbur has worked at the Dental Clinic for the past 17 years as an office manager.

“It all just happened so fast. I think we were just in shock,” Wilbur said of the day she took Daniel to see Wilborn.

When Daniel was referred to Seattle Children’s Hospital for blood tests, “he and I were both looking at each other like, we knew it was something serious but we just had no clue,” his mom said. “He and I just started crying. I said, ‘we’re going to figure this out, it’s going to be okay.’”

When Daniel arrived at the hospital, his white blood cell count was extremely low.

“We were Googling and writing everything down,” Wilbur said. She was also texting people, including her good friend Jamie Rienstra, whose daughter Ashlyn put up a huge fight to beat leukemia into remission two years ago.

The day of Daniel’s first hospital stay is etched into both mother and son’s memories, even down to the exact times that different events occurred. Wilbur recalls specific details, like when she took Daniel’s shoe off in the emergency room to see that his whole foot was purple.

Almost immediately, he took a turn for the worse. His doctors discovered in an emergency CT scan that he had a concussion because his brain was bleeding due to his low platelet count, Wilbur said.

What followed was a parent’s nightmare—in the early morning, a “Code Blue” was called and she and Daniel’s father were sent out to the waiting room until the late evening.

“Code Blue is basically when a kid probably won’t make it,” Daniel interjected.

But the young warrior survived the night, and the months that followed were just as tough for him and his family. He endured surgery to remove a portion of his skull, suffered bleeding in his lungs, blood infections, kidney and respiratory failure.

“He didn’t get out of the hospital for eight months and wasn’t able to leave Seattle for 15,” Wilbur said. Also, “he couldn’t even eat for the first six months—he survived on glucose water.”

Now, he can spend more time at home. He wears the helmet signed by some of the many celebrities he’s met from his time at the hospital— Seahawks players Byron Maxwell, Russell Wilson and Richard Sherman, and singer Ciara and movie star Chris Pratt.

Wilbur said Daniel is treated by 16 or 17 different teams of doctors and has kidney dialysis several times a week and takes smorgasbord of medicine.

“It’s been a real roller coaster ride,” Wilbur said.

In July 2015, Daniel got a bone marrow transplant from his father, the closest match for him.

His father is half-Filipino and have-Native American, Wilbur said. Because she is fully Native American, she said, getting an ideal genetic match for Daniel is difficult.

“They treat severe aplastic anemia like a cancer—it’s a blood disease,” she said. “He had to get chemotherapy.”

The ideal next step for Daniel is switching to dialysis at home instead of Seattle, which might allow him to attend school two days a week, Wilbur said.

Recently they’ve had hopeful news. “There is evidence that his own bone marrow is starting to work,” Wilbur said.

Daniel may not be able to play sports or hunt and fish now, but he draws, writes poetry and makes bracelets for people. At Children’s Hospital, he took classes and had a poem published.

The Swinomish Indian Tribal Community has rallied around Daniel, with multiple fundraisers and hosted a blood drive in his name.

Soon, a “Dimes for Daniel” fundraiser will be coming to Pioneer Market, run by Wilbur’s longtime friend, Rienstra, who is coordinating the effort through the La Conner Middle School Key Club.