Born April 1999 | Santa Clarita, CA
Living with Hemophilia B
“Yeah, I'm in a wheelchair. But what's important to me is that I'm alive and I have my family.”
Raising four boys is no easy task, and Ana is quick to tell you how much energy it takes. “As a mother you don't have time to stop and think,” she relates. “It's automatic. You just keep going and going.” Her duties involve the usual—providing meals, keeping house, transportation to and fro—yet, Ana's days involve complications that most mothers don't typically manage. Her two younger sons, Sammy and Carlos both have Hemophilia B, a condition that comes with unique challenges. They work together to improve each other’s lives with good humor and uncanny responsiveness.
Sammy, the older of the two, has the most severe complications. Aside from Hemophilia B, he was also born with Spina Bifida and Hydrocephalus, conditions that required surgeries after birth. “There were so many complications when he was born, that I actually forgot that Hemophilia ran in my family,” says Ana. “We were already in Neo-Natal when the doctors realized Sammy also had Hemophilia.” Ana spent nearly three weeks at the NICU. “It was overwhelming. On top of everything, I just wasn't sure how we were going to treat it.”
Sammy has developed into a calm, loving, and charismatic young man. “Yeah, I'm in a wheelchair,” says Sammy. “But what's important to me is that I'm alive and I have my family.” Hemophilia has been a burden for Sammy, but also a tool for living with care and responsibility. “Living with Hemophilia has taught me how to take care of myself. It has taught me that minor bruises can be a big deal... Hemophilia is not a common disease, but it has made me a stronger person.” He is in college now, having just completed his first semester, and is busy planning his future. “I wanted to be a meteorologist,” he says. “But because I'm such a big sports guy, I’m preparing to be a sports reporter.”
Sammy’s love of sports defies his physical limitations. “I’m a hockey freak. I love hockey,” he says. “Watching the games at home is always something I look forward to.” He is trying to find a sled-hockey team in his area so he can play with others who use wheelchairs. He also likes being outdoors. This past summer he spent time at Camp Nej, near Lake Tahoe, CA. “It was so great to be in the woods,” says Sammy. “I really enjoyed the kayaking. That was probably my favorite. I feel so free on the water.” Sammy takes part in a local therapeutic equine riding program. “I’ve been riding for about five years,” he says. “It helps with my balance and it’s nice to get out of my chair.” The riding has been fun, although at times the movements of the horse can cause bleeds. “One of the worst episodes was from riding,” recalls Ana. “I get bladder bleeds,” says Sammy, reflecting on some of the difficulties living with Hemophilia presents. Despite proceeding through the world with caution, little can temper his zest for life.
“I'm a hockey freak. I love hockey. Watching the games at home is always something I look forward to.”
On the other hand, Carlos, Sammy’s younger brother, does activities that would make most parents anxious, regardless of if their child was a hemophiliac. “He's a bit of a daredevil,” says Ana, laughing uncomfortably. Carlos loves the outdoors—backpacking, fishing, rock-climbing, and even dirt-biking. Sammy admits he sometimes is concerned for his younger brother. “It's hard for me to watch sometimes, because I get worried he's going to hurt himself.” Carlos’ main challenge has been internal bleeds around his ankles, especially after long hikes. This can damage the cartilage in his joints, and lead to arthritis. Carlos is aware that some of the risks he runs may have irreversible impact. “I need to remind myself more of the dangers and the realities of what I'm getting myself into,” he says. Despite his brazen methods of finding fun, Carlos hopes to get into veterinary school in the coming year, followed by five years of rigorous study. His desire to be a caretaker himself is evident through his actions—helping Sammy in and out of the car, giving his chair the extra push when needed—and is no doubt inspired by his mother’s compassion.
Over the years Ana has taken her boys’ health into her own hands, literally, by training herself to inject Factor IX, the clotting factor missing from their blood. Inspiration came from a series of frustrating mishaps in hospitals with staff that was unfamiliar with her sons’ conditions. “Then, I started learning how to infuse. Now we don't have to go to the hospital unless it's something major.” She reacts to each situation as it arises, always anticipating the future. “It's all about preparation,” she says. For example, this year Sammy had multiple surgeries for a cerebral shunt that wasn't positioned properly. “The surgery itself was bad, but with the Hemophilia, it was much worse.” She had to make sure Sammy was adequately supplied with factor before any operation. Ana, Sammy, and Carlos are learning together on how to stay prepared for each situation. “The worst is when both boys are bleeding at the same time. I have to do one then the other.” Her presence of mind is reliably unphased by such events. “I just brew a strong coffee and then I'm okay.”
Her ease around the subject is notable, as Hemophilia has affected generations of her family It fosters a sense of responsibility, vigilance, and compassion from the hardships they’ve shared. When she was six months old, living in Guatemala, Ana lost her father to Hemophilia after a tonsillectomy. He was 24. The surgeons could not determine which clotting factor was missing from his blood. They sent away for tests, but by the time the results came back it was too late. Ana and her immediate family left her home country of Guatemala when she was one year old and headed to California.
Reflecting on her father's death, Ana sees today’s treatments for Hemophilia as a major step forward in making the disease more manageable. “It's even better now. There's resources and medications. It's not hard. If you treat it correctly and you have the support and foundations around you that help, you can survive.” The family found support through the National Hemophilia Foundation (NHF), the largest, national foundation, and the Latino Hemophilia Foundation, which provides resources to Spanish-speaking families in the US.
Whether it's being mom, playing nurse, or just hanging out with her two younger sons, Ana is committed to improving the quality of life for other hemophiliacs beyond her own family and household. “In Guatemala, my cousin with Hemophilia hasn't been able to get his tooth extracted for months because he doesn't have any factor,” she says, commenting on the lack of medication available in her home country. Ana hopes to start a foundation in Guatemala for Hemophiliacs, to send them medication from the US in order for people to get the operations they need. “As a family, we try to advocate,” she says. She hopes their story will be an inspiration to other families, to help them achieve more normal lives.
Sammy too, wants to spread awareness about the disease. Sponsored by the NHF, Sammy has travelled the US to talk about his condition, network with other hemophiliacs, and advocate. “I want to see the drug developers make factor more affordable for the community,” he says. He hopes for better treatments to be available in the future. “Personally, I would be willing to try something else,” says Sammy. “I would be willing to take a risk if needed.” For now, he is busy filling his home in southern California with good cheer and inspiration, just the sort of fuel to keep his busy mother going strong. “Sammy's amazing,” says Ana. “Not just as a son, but as a human being.”