December 4, 2017 | by Deborah Stambler
In his dark green school uniform shirt and baggy shorts, 14-year-old Nathan Mermilliod looks like a typical high school sophomore. Between school, church, friends and play rehearsal, his days are pretty full.
Nathan and his sister, Emma, both sing, perform and travel with the group Heal with Music. He’s starting to think about college and pursuing a career in medicine, and he thinks he’s up to the challenge of medical school. He’s had some significant role models in that area, considering that he started coming to City of Hope when he was 2 months old.
It became apparent to Nathan's mother, Jennifer, that something was out of the ordinary with him hours after he was born. After the standard heel stick test, Jason kept bleeding. It turned out he had been born with hemophilia B, an extremely rare form of the disease. From day one, his mom had to learn how to be an advocate for her son’s health care.
Along with her team at the Hemophilia Treatment Center, Nadia Ewing, M.D., director of City of Hope’s Hemophilia and Sickle Cell Program, often develops close relationships with her patients and their families.
The goal, according to Ewing, is more than just stopping a bleed.
“We’re striving to support very normal, happy, well-adjusted kids,” she said. “We encourage independence.”
And while there have been exciting advances in treatment, the ultimate goal is a cure for hemophilia.
But until that cure is found, prophylactic treatment known as “factoring” keeps the disease under control and keeps Nathan out of the ER – for the most part. He’s had times when he had to be on crutches. And there was the time not too long ago when he got hit in the arm with a baseball bat. That would have been a nasty bruise for most people, but for Nathan it meant a trip to the hospital due to fears over internal bleeding.
His mom remembers that as a baby learning to crawl, Nathan's legs would be covered in lumps and bruises because he wasn’t on prophylactic treatment yet.
“It hurt to look at it and have him be injured that way, but it was also worrisome because I knew people in the hemophilia community had had people call Child Protective Services,” she said. “So we did a couple of things: My husband and I learned how to sew and we got fleece and sewed it into the knees of all his pants. And that cut down on it. But one time I was in the grocery store with him and the checker asked about his bruises. Feeling self-conscious all the time was making me uncomfortable and it was changing who I was, and I knew that had the potential to change who he would be. I made the decision then and there that I would see it was a good thing in this world that people care about children.”
Jennifer created a card with information about hemophilia that she’d hand out while thanking people for asking about Nathan. The Hemophilia Foundation ended up giving the card to families to use in raising awareness, with English on one side and Spanish on the other.
Most people don’t know much about hemophilia, said Nathan. “People think I gush blood when I’m hurt, but really it’s the same amount of blood as everybody else. It’s just that it takes longer for it to stop, but people think it bleeds faster. That’s one of the common misconceptions. People think if something little happens I could die of blood loss and that’s just not true.”
For Nathan, appointments with Ewing and the team have always been in his life and he clearly feels connected to the whole team.
“I’ve always been there so it’s just the tradition of the thing – going to City of Hope, taking a picture at the fountain in the front, seeing all the doctors. That’s what I love,” he said. “Then we go to Spaghetti Factory afterwards. I like the food aspect!”
Jennifer speaks candidly about having a child with a chronic condition: “I think there are a lot of parents who don’t think they could handle it – hemophilia or anything else,” she said. “What I’ve realized now is that we think we’re the luckiest parents in the world because it’s just the baby God gave us. I can’t even separate hemophilia from Nathan. That’s what I think people should know ... families and parents who have a child with a disability, they don’t feel bad about their lives or wish it had turned out differently. We feel like the luckiest parents in the world to have Nathan in our lives.”