Couple turns frustration into foundation

As 4-year-old Liam O'Meara participates in the Clarendon Hills Park District's Pee Wee Start Smart Golf program on a recent Thursday afternoon, he swings a club, gets instruction, and has fun. He is just like any other class member.

But underneath his white polo shirt, Liam is not the same. He bears the scars of three surgeries already in his young life.

The Clarendon Hills youth was born in 2006 with half a heart. Stricken with Hypoplastic Left Heart Syndrome, Liam had doctors at Children's Hospital of Wisconsin reconfigure his heart to operate with a single ventricle.

From first finding out about Liam's condition at 22 weeks into the pregnancy to his prognosis for the future, Liam's parents, Brian and Bridget O'Meara, didn't get a lot of answers along the way because there are not a lot of answers out there. A lot of what they heard from medical specialists was "We don't know."

"So much of everything was out of our hands," Bridget O'Meara said.

Despite not a lot of clear answers, Bridget couldn't speak highly enough of the staff at Children's Hospital of Wisconsin.

"They held our hands. They gave us a lot of support," she said.

She also said they were blessed to have a lot of family and friend support.

Knowing that everyone does not have such a strong support system, the O'Mearas created the Mend a Heart Foundation to support initiatives that extend and enrich the lives of young heart patients. They said they wanted to create a resource for other parents of heart patients and be a funding mechanism for research.

"We wanted to take back some of the fight and that is how the idea (for the foundation) was born," Brian O'Meara said.

The foundation will have its fourth fund-raiser Saturday, Oct. 16 in the gym at Notre Dame School, 66 Norfolk Ave., Clarendon Hills. The O'Mearas hope to raise as much as $50,000 with the one-night fundraiser.

The first three fund-raisers netted a total of $90,000, much of which has gone to fund heart studies.

Coordinating an annual fund-raiser while raising three boys keeps the Clarendon Hills couple on their toes.

"I don't get much sleep this time of year," Bridget admitted, quickly adding that she has a lot of help from friends in organizing the event.

"You do something four years in a row and you get to know the lay of the land," Brian said.

Through their work with the foundation, the O'Mearas have met many other parents and individuals with family members with heart conditions.

"A lot of people have told us their stories," Brian said. "Someone will tell us 'My cousin has a heart condition.' We now know of kids in town who have heart conditions."

Liam's right ventricle will eventually wear out, making a heart transplant the likely course of action. However, the O'Mearas hope that their fund-raising efforts will pay dividends for their son when that time comes. Whether it be by creation of another ventricle through stem cells or some other process, the O'Mearas hope the research they fund can find an answer for when the atrophy occurs.

Brian O'Meara noted that 20 years ago Liam's condition was almost always fatal. He said the research done since then has helped save his son's life.

"I hope that 20 years from now, doctors and families will be using equipment and procedures identified in the research we are funding," Brian said. "I hope that because of what we are doing now that 20 years from now we will have come along with medical solutions to these problems."

Mend a Heart has funded research into the effect of exercise on heart patients, as well as looking at a drug that could keep heart transplants from being needed. The organization also has helped fund Camp Odayin, a Minnesota summer camp for youth with heart conditions. The camp has a cardiologist in each cabin to monitor youth.

"Our mission statement says we aim to extend and enrich the lives of children," Brian said. "We have worked on extending lives through the research. We wanted to include enrichment and we included the summer camp."

The O'Mearas have a medical board of directors that examines the half-dozen applications the foundation receives for funding annually.

"I like to give individuals hope," Brian said. "People long ago helped save Liam's life through the research that was done. I would like to give someone else that piece of mind."

Bridget noted that doctors have put few rules and regulations on Liam at this point.

"Other than keeping him out of contact sports, he doesn't have many restrictions," Bridget said.

"The doctors said he will be self-regulating," Brian said. "His body will tell him what he needs to know."

Bridget said Liam's two brothers, Finn, 6; and Seamus, 2, don't treat him any differently because of his condition.

"He is always trying to keep up with his older brother," Bridget said.

suntimes.com