SNOHOMISH — Sammy Avalos has one speed: Run as fast as possible.
At the Avalos family’s home, a white century-old barnhouse near Snohomish, Sammy is often hammering the hardwood floors with his feet as he races from room to room.
His mother, Genesis Avalos, said he’s one of the bravest, most adventurous kids she’s ever known. But his can-do-anything attitude can be concerning at times.
Sammy, 4, has severe hemophilia, a hereditary bleeding disorder that prevents wounds from clotting properly. A small injury can turn into a visit to the emergency room. Or he can get spontaneous joint bleeds, where his ankles, knees or fingers swell.
But Avalos wants others to know that hemophilia is not a death sentence. With the proper treatment, the life expectancy of people with hemophilia is catching up to the national average.
“The diagnosis itself is terrifying until you find out it’s manageable,” Avalos said. “They can go on to live a very wonderful, normal life.”
There was always a chance that Sammy would get hemophilia, which primarily affects men, Avalos said. Her great-great-grandmother had three sons who had hemophilia. Since then, though, no one else in the family has been born with it.
Avalos had her older son, Timothy, 8, tested as a precaution, but he was negative. When it was Sammy’s turn, the pediatrician didn’t think it was necessary.
Then Avalos took her son for a routine procedure. Afterward, Sammy wouldn’t stop bleeding. Nothing the doctor did helped. Avalos tried taking Sammy to a specialist across the street, but he couldn’t help either.
As the clock ticked, Sammy’s color changed. So did his breathing.
“At that point I asked the doctor to stop and scooped the baby up and ran back across the street to the emergency room,” Avalos said.
The medical staff there called an ambulance to take Sammy to Seattle Children’s Hospital. Four hours had passed since the procedure and he was in critical condition. The doctor said he wasn’t sure he would live.
Sammy received a blood transfusion.
A few hours later, he was diagnosed with hemophilia.
That same day, Avalos and her husband were down in the cafeteria taking a break. She watched as a 3-year-old boy was “bouncing off the walls” with energy.
“I just sat there and I started crying,” she said.
She remembers thinking, “I know how active a toddler is. I have one at home already. … How am I going to keep this child alive?”
What followed were more questions — lots of them, Avalos said. Like, could a paper cut kill her baby? Would he have to live in a bubble? (No and no, thankfully.)
Then, there were the medical bills. Avalos had to go back to work as an ICU nurse if she wanted any chance of keeping up with payments. Without insurance, the medication alone would bankrupt the family, she said.
She has to give her son doses of Factor 8, a blood-clotting protein that most people have naturally. Each unit costs $1 and, at first, Sammy needed 250 units three days per week.
Then he developed an inhibitor, meaning his immune system was resisting the medication. So his dosages were kicked up to 2,000 units every day.
When it came to managing emotions and expectations, the first year was the worst. Things got better when the family connected with people who went through the same experiences through a parents group hosted by the Bleeding Disorder Foundation of Washington, a nonprofit based in Edmonds.
“It was very important to meet those other families and see those toddlers that run around like Sammy does right now,” Avalos said.
She said the foundation has played an integral part in helping her family deal with hemophilia. She’s now a board member.
When Sammy is older, he’ll go to Camp I-Vy, where he will get the chance to play with other kids who have hemophilia and to learn how to take care of medical needs.
“We learn how to play safe,” said Stephanie Simpson, executive director of the foundation.
Avalos has become more active in supporting the nonprofit. She participates in the organization’s yearly Bloody Fun Run and she’s even met with U.S. Rep. Suzan DelBene to talk about the Affordable Care Act.
These days, Sammy swims, he rides his bicycle and he makes smoothies with his sister. He understands that he has hemophilia, though he’s never asked why his siblings don’t get the same medications.
“For him it’s normal life,” Avalos said. “It’s what we’ve been doing since he was a baby, so he doesn’t even register that there’s a difference.”
They have to let Sammy be himself, which can bring them varying levels of anxiety.
Until recently he had a propensity for being a “superjumper.” One time, he found his way to the top of the fridge and had every intention of jumping off, before being stopped by his parents.
On another occasion, he fell off his bicycle and hit his head on the corner of the sidewalk, requiring stitches.
This spring, Sammy will play his first sport: T-ball. He wants to play baseball like his older brother. Doctors say he can participate in pretty much any activity, except football and wrestling.
“That terrifies me though,” said Avalos, who also doesn’t want to hold him back.
The Bleeding Disorder Foundation of Washington, a nonprofit based in Edmonds, plans a fundraising event at 9 a.m. Oct. 27 at Green Lake Park in Seattle. It includes a fun run, carnival games, pumpkin crafts and costume contests.
Register at walk.bdfwa.org.