Engram’s fight to find a cure

Fast. Tough. Reliable.

Seahawk helps battle sickle-cell anemia

Fast. Tough. Reliable.

These are the traits Bobby Engram possesses on the football field, the traits that helped the wide receiver lead the Seahawks last season in receptions and receiving yards. The same traits that allow a 35-year-old man to continue to excel in a young man’s game, to become the team’s most valuable receiving threat.

But these aren’t the same traits that have Engram doing his best work yet.

That would be the trait for sickle cell anemia. Engram has the trait for the hereditary blood disorder; so does his wife Deanna. That meant a 1-in-4 chance that one of their children would be born with the disease.

It only took one. Their first child, a little girl, was the one in four.

She’s the reason for Bobby Engram’s continued fight against the disease without a cure.

ONE IN FOUR

Sickle cell disease affects the red blood cells in the body abnormally, turning the cells into the shape of a crescent moon, which causes the blood to clump up, which in turn causes severe pain. These “pain crises,” as they’re called, can cause a host of problems that can complicate a child’s life: hip pain, joint pain and much more. The disorder affects primarily people of color.

This is what Bobbi Engram has lived with for the past 10 years. Bobby and Deanna found out their daughter had the disease at birth.

“You’re confused. Frustrated. You’re angry. You go through this range of emotions and then you accept it,” Bobby says. “You learn and you educate yourself.”

Which is what Bobby and Deanna set out to do, to learn about the disorder, to help other parents cope with the rigors of raising a child with sickle cell disease. Every case is different, he says. Some kids end up in the hospital once or twice a month; that’s not even counting the different “mini-crises” that constantly occur.

Some parents can’t cope with it; others aren’t educated enough about the disease to manage the pain. It strains on a family, says Bobby, who has two other children: Dean, 8, and Tre, 3.

“It’s a tough and horrible disease to grow up with,” Bobby says. “It can be an emotional drain on everyone. This is a real thing that needs to be dealt with.”

That’s where the Bobby Engram Foundation comes in. The goal is simple: find a cure.

‘THE ULTIMATE GOAL’

Bobby says he can’t take credit for starting the Bellevue-based foundation. Neither can Deanna.

No, it was little Bobbi who put the wheels in motion with a simple statement to her father.

“She told me ‘I want to help. How can I help other people?’,” Bobby says. “For a kid to have that kind of insight, that was very powerful to us.”

It struck him to start a foundation, Bobby says, but he wanted to make sure the time was right. Many athletes start charities. Not all of them go well. But this one was different.

This one was personal. Bobby says he felt he needed to get it done right.

“I think there is a reason that God gave my daughter sickle cell,” he says. “It’s time for me to step up and use my platform as an NFL player. Everything happens for a reason.”

The foundation, which was formed last year, helps to educate parents and raise money for sickle cell research, Bobby says, with the end game of finding a cure.

“The ultimate goal is to find a cure; that’s why I’m in this,” he says. “In the interim we want to give money to help kids, learn about how to better manage the pain, set up support systems for families. But without a doubt the ultimate goal is to find a cure.”

The foundation also hopes to help kids with sickle cell connect with other children afflicted with the disease, as well as help potential parents get trait tested.

“A lot of people don’t know anything about sickle cell or know if they have the trait” says Ken West, president of the Metropolitan Seattle Sickle Cell Task Force. “Now is our chance to to lift awareness up and Bobby is an excellent conduit for that. If we’re going to find a cure for this, we’re going to need money and people to help us. Bobby is a big part of that.”

West, who has sickle cell disease, and his organization will be working with the foundation side-by-side. There’s many things they want to do, Bobby says, it’s just all about figuring out the best way to do it.

“Right now it’s just all of us putting our heads together and running this thing the right way,” Bobby says. “I want to be able to be very hands on. As soon as we refine our vision we’ll start expanding rapidly.”

“We just have to figure out what that vision is.”

HOPE FOR THE FUTURE

It’s easy to detect the enthusiasm Bobby has when talking about his daughter and the potential of the foundation.

The idea that started with Bobbi Engram is causing hope to spread. After all, Bobby knows exactly what other families are going through. His daughter’s experience is what drives him.

“She’s why the foundation is in existence,” Bobby says. “Sometimes kids are so honest and they have a wisdom beyond their years. She is a blessing.”

Bobby says he knows he’s fortunate; his 13-year NFL career allows his family the chance to take care of Bobbi’s needs the way other families might not be able to take care of their own child.

That’s what motivates him, says Brigid Graham, Consulting Director for the Bobby Engram Foundation. That’s why Bobby Engram keeps fighting.

“He wants to help the thousands of people who share the heartbreak of watching a child in pain,” Graham says. “He is dedicated to finding a way for families to work with doctors and hospitals so these children can become adults and champion their own health issues.”

That starts with action, Bobby says. The Bobby Engram Foundation will be hosting its third-annual Walk for Sickle Cell on August 31 from 10 a.m. to 2 p.m. at Seward Park in Seattle. Proceeds from the event will provide funds and support to other local organizations dedicated to fighting the disease.

“These walks have been a tremendous success and the people have really come out and been supportive,” Bobby says. “It’s a fun-filled family day. We’ll be trait testing, we’ll have food; it’s just a big family thing.”

Family. That’s the reason Bobby Engram will continue to fight the fight. For his family. For other families. For all families.

“I feel like it is just the right thing to do because sometimes these families think they have no hope, no voice and no one there for them,” he says. “We want to change that.”

Joel Willits can be reached at 425-453-5045 or at jwillits@reporternewspapers.com.