Sickle Cell Camp '11
Thanks to eveyone who made Sickle Cell Camp '11 a success.
Faces of Sickle Cell
Seattle Seahawk and his family want to shine a light on sickle cell disease
Bobby Engram didn't know. Neither did his wife, Deanna.
They found out when Deanna was pregnant with their first child that they both had sickle cell trait and had passed the gene on to their baby.
Daughter Bobbi, diagnosed through a prenatal blood test, represents the Engrams' one-in-four chance of having a child with sickle cell disease.
The inherited blood disorder causes red cells to turn sickle- or crescent-shaped and jam up and block small vessels, bringing pain, anemia and the potential for serious infections and organ damage.
The last eight years have been an on-going education for the Seattle Seahawk wide receiver and his family. They've learned from medical professionals, research and their own trial and error how to manage and live with the condition.
Now they want to use that knowledge - and Bobby's celebrity - to shine a spotlight on a disorder few people seem to know about, much less understand.
This fall, the Engrams helped kick off a new project led by Odessa Brown Children's Clinic to bring greater awareness to the disease. By partnering with families, schools, health care providers and local communities, the Northwest Sickle Cell Collaborative educates and supports families living with sickle cell disease and trait.
Bobby and Deanna didn't know much about sickle cell until it hit them between the eyes. Their parents never told them they had the trait, meaning they each carry a gene for the disease but don't have the disease itself.
"Hopefully, other people will learn from us, get testing and genetic counseling, and be a little more prepared than we were," Bobby says. "It's not a shameful thing to say 'I don't know, I don't understand.' You've just got to go and get the knowledge."
Sickle cell never entered their minds when they met as students at Pennsylvania State University and fell in love, nor was it discussed when they got married and decided to start a family. They've since had two more children, 6-year-old Dean and 1-year-old Trey, who both beat the genetic odds.
"We feel blessed to have two kids without it," Bobby says. "We want to have more but the possibility of passing the disease down factors into your decision."
"Little Bobbi," as she is known to her family, is more fortunate than some with the disease. She gets one or two "pain crises" a year and has to avoid activities that are too strenuous or expose her to cold, which can trigger an attack. Aside from that, she's a normal 8-year-old who goes to school, jumps and plays, loves animals and dreams of being a veterinarian some day.
"She's a very happy little girl," says her dad. "But whenever she has a pain crisis, it shuts her down. That's the toughest part, seeing your kid hurt like that."
Bobby can only imagine the pain that keeps his daughter up all night and can last days. He's had his share of muscle cramps playing football. But his daughter's pain is like a "full-body cramp" that starts in her back and abdomen and spreads to her legs.
The most recent episode in June caused Bobby to miss a day of "mini-camp" with his team. "The people at the Seahawks organization were great about it. I couldn't be at work while my daughter was in the emergency room."
When Bobbi was younger, she used to ask, "Why me? Why are my cells sick?"
But over the years, she's come to accept it, her father says.
In fact, the soon-to-be third grader says she doesn't find it hard to tell her friends about the disease.
"I tell them what I have to go through because they may not know what's the matter with me, and they could worry about me a lot," she says.
Adds her father: "She's just getting comfortable talking about it. Kids don't want to be different."
Bobby and Deanna hope that by sharing their story they can remove some of the stigma around the disease and get people talking and sharing information.
"I want people to be educated about what it is and how to care for it," says Deanna, who also would like to start a scholarship program to help less fortunate families. "It's almost like it's a silent disease."
Her husband agrees. As a professional athlete, he says he wants to do his part to change that. "You see people for all these other diseases that have a national stage. I think this one deserves one as well."
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