E. Oregon, Idaho families both battle similar heart disease

Credit: Mike di Donato/ KTVB

E. Oregon, Idaho families both battle similar heart disease

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by Jamie Grey

Bio | Email | Follow: @KTVBJamieGrey

KTVB.COM

Posted on June 5, 2013 at 10:28 PM

Updated Thursday, Dec 5 at 6:54 PM

BOISE -- Five brothers and sisters from eastern Oregon and their parents are bringing national attention to a rare genetic heart disease.

The Bingham family of Haines, Oregon was featured Wednesday night on "Dateline NBC" as cameras captured an entire year of their lives battling a potentially deadly condition.

Two of the Bingham daughters have had heart transplants, one of their sons has a pacemaker, and the other two may eventually need surgery just to survive.

After seeing a preview for the "Dateline" story, a Boise family found they could relate to the Binghams in a very real way. The Serre family also has three members with the same condition as the Bingham kids: Dilated Cardiomyopathy, a disease that can cause heart failure.

Andrew Serre was diagnosed with cardiomyopathy at 6 months old. His 8-year-old son, Jacob, also has the disease, and his 5-year-old daughter, Adilyn, tested positive for the mutation. Nine-year-old, Ashlyn, and Andrew's wife, Jinjue, do not have signs of the disease.

It wasn't until recently, says Andrew Serre, that doctors realized dilated cardiomyopathy may be genetic.

"You start having kids and it's the last thing on your mind. You kind of just don't sit there and think, 'Could I potentially have kids that would have the same heart disease that I do?" Andrew Serre said.

The Serres say it won't be easy to eventually explain in more detail to their kids about the genetics involved with the disease.

"It's not going to be easy to sit down and have that talk with them about when they want to have families that the potential possibility for them having the same thing could be a possibility," Andrew Serre said. "You don't want that. As parents you want to have grandchildren, but you just can't worry about that because you're not in the driver's seat."

Andrew Serre has a pacemaker, and Jacob was recently evaluated in California for a possible heart transplant. For now, Jacob doesn't need a transplant and is stable with medication, but the Serres don't know what's ahead.

"A third of the kids die, a third of the kids transplant, and a third of the kids stabilize," Andrew Serre said.

"They're doing really good right now, so we try to just be as normal as we can be because we know that we could wake up tomorrow and they could be in failure and need a transplant," Jinjue Serre said. "It could just come out of nowhere or they could just be stable the rest of their lives. That's what we're hoping, but we don't know what's going to happen."

The Serres feel fortunate because they have all been diagnosed early and say they have medical teams already in place to help. Because of the cardiomypathy, all the Serre kids are all home-schooled. Andrew Serre says they don't slow down and keep up with activities they all love.

"Life is too great to not do what you love to do. We're a family that believes in that, that we like to do what we love to do," Andrew Serre said. "I think we've been well prepared for this. We have an amazing family structure, a great church."

They also belong to a support group called Courageous Hearts of Idaho.

The Serres say with health care privacy laws it can be hard to connect with other families with similar situations. To jump that hurdle, they helped start a support group called Courageous Hearts of Idaho after they realized there wasn't a group for families with kids who have heart disease.

To watch the Dateline episode about the Binghams, click here.

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