Young Adults Brandon: Career Man
Today, Brandon Downey is living his dream. He enjoys a rewarding career in the computer technology field on his way to becoming independent. He also spends free time mentoring boys with hemophilia. Like the mentors who helped him years ago, he takes time out of his busy schedule to help younger friends manage hemophilia’s many challenges—and find the same success he has achieved.
It’s hard to believe that, not too long ago, Brandon’s dream seemed completely out of reach. Brandon’s story began in the summer of 1988 when he was born to his mother, Pam. Living in the city of Chicago, making ends meet was at the top of Pam’s mind.
Adding a son to the mix made it that much more difficult.
“I thought I was having a tough time when I first had Brandon,” Pam says. “But I learned real fast that things were going to get a lot harder.”
She got her first clue when Brandon, at six months old, developed bruises on his body, even after low-impact activities like crawling. She took him to the hospital where, to her surprise, he was diagnosed with severe hemophilia.
“It was so much to digest,” Pam says. “I was being hit with everything so quickly, at a point when I was just starting to get a handle on being a mother. When Brandon began to walk, which led to stumbles, which led to falls, I really started to realize what I was up against.”
As Brandon got older, he made his mother work even harder to keep him safe. Her efforts backfired, though, as he rebelled against anyone who tried to protect him.
“They paint this picture for you that you can’t do anything, and Brandon was bound and determined that he was going to prove them wrong,” says Pam. He put himself in harm’s way often—taking risks that were anything but smart for someone with hemophilia.
“I look back on some of the things I did when I was a kid, and I can’t believe it,” Brandon says. “Me and my friends, we did some really dangerous stuff to impress each other. Stuff that was dangerous for them, and they didn’t even have hemophilia. We’d put each other inside shopping carts and shove them down huge hills—just crazy stuff. We drove my mother nuts.”
Frustration was high. Pam tried repeatedly to protect Brandon, who refused to protect himself. When communication had finally broken down, they asked for help.
“Here I was, a single mother, in way over my head, dealing with a disease that I’d never heard of, and I needed to talk to someone else who’d been in my shoes,” says Pam.
They were looking for just one person who could understand what they were going through. Through their local chapter, they found an entire network of people, affected by hemophilia, who were there to help. They got all the help they needed and then some. For the first time, Pam could share her experiences with parents who understood what she was going through and could help her gain new insights on how to raise a child with hemophilia.
One of them was Susan Gammerman, a registered nurse at Chicago’s Children’s Memorial Hemophilia Treatment Center. Another community member introduced Pam to Susan, who connected her to a whole network of people who could help. To Pam, Susan was her “first lifeline” to the community.
“Hemophilia is a road of highs and lows,” Pam says. “It’s a difficult ride, but you can handle it if you don’t try to drive it all by yourself. You have to reach out to the community because there are a lot of people who are there for you. If it wasn’t for the treatment center, I wouldn’t have made it.”
At the same time, Brandon met people of all ages who could get past his rebellious attitude and find the person underneath.
“I’ve gotten so much help from the community,” he says. “Some of those people are my best friends.”
One of those people, a 40-something with hemophilia, saw Brandon as a younger version of himself. He gave Brandon advice on decision-making and peer pressure, helping him change his self-destructive path.
“Through him, I saw that taking care of my body is more important than getting a quick laugh from my buddies,” Brandon says. “He used to tell me, ‘You got this far because you were lucky. But luck doesn’t last forever. Sooner or later you have to start being responsible.’”
Soon after, something began to change in Brandon: he matured. He began taking better care of himself. He stopped rebelling and he started making more responsible decisions. Before long, he even began helping others, working with younger children with hemophilia who were new to the community.
“I usually work with the young kids, teaching them the little things they need to know to survive in the real world,” Brandon says. “We talk about work or school, or what’s going on in their lives. They know I’m there to listen and they can learn from my mistakes.” All of a sudden, the hard times didn’t seem so hard anymore.
He now has a head start on realizing his dream of a career in computer technology, working as a computer technician in the Chicago suburbs. He builds mainframes and servers for large corporations. “It helps me stay up-to-date on the latest technology that comes out, which is really interesting to me,” he says. “Plus, it’s a safe job—I’m not out there putting my body at risk or anything—and it gives me the good health benefits.”
Outside of work, Brandon’s time is occupied by his pride and joy: a ’95 Nissan Maxima given to him by his grandparents. He spends most of his free time working on it, inside and out. For him, it’s a hobby—but for Pam, it serves as a reminder of his new level of responsibility that has led to hard-earned freedom.
Brandon believes that he owes at least some of his success to a realization that came to him a few years ago. That’s when he decided that, if he was going to make the most of his life, he would have to approach hemophilia the way the community does: not as a burden, but as an opportunity.
“It’s all about your attitude,” Brandon says. “If you let hemophilia set you back, then of course it’s going to seem like the biggest burden in the world. If you have a good attitude, it can actually make you stronger, so you succeed." Brandon’s first step toward being responsible came as early as age 11, when he learned to self-infuse. Until that point, Pam couldn’t infuse Brandon herself, though she tried her best. So when Brandon returned from hemophilia camp knowing how to self-infuse, she experienced one of her proudest moments as a parent, right up there with his high school graduation.
“I thought I’d never be so proud of him as I was when he learned to self-infuse,” Pam says. “But graduating is a big step forward, too. It’s a big accomplishment for an African American man living in the inner city, with all the peer pressure.” If you ask Brandon, graduation was a given.
When he learned to self-infuse, it helped him begin the long process of taking control over his life, setting him up for success in the future.
“I can tell you this,” Brandon says. “I am a stronger person than I would’ve been without hemophilia. I’m definitely a wiser person.”
For Brandon and Pam, passing their good fortune on to others is just part of being in the hemophilia community. They know what it’s like to feel alone, and they make themselves available to connect with the community so others don't have to feel like they did.
“Having someone who understands means everything,” Pam says. “If you’re going through what I’ve been through, you have to talk to people in the community, because you can’t do it alone. It takes a village to raise a child, and sometimes you need to find your own village. There are so many people out there who can help. All you have to do is reach out.”
