Walk raises funds, awareness for those with heart defects

By: Terry Oparka | Troy Times | Published September 12, 2017

TROY — Alana Stephens, almost 5, of Troy, was born with a very rare congenital heart defect. 

Her mother, Amy, explained that Alana’s condition, Ebstein’s anomaly — when a valve in the heart is displaced, in Alana’s case, being too low — accounts for only 1 percent of all congenital heart defects. 

“I’ve only met three other people with it,” Amy Stephens said. 

“There is no cure,” she said. “Surgery is not a permanent fix, and patients are monitored throughout their lifetimes.” 

Alana had surgery when she was 2 years old, and her mother said she is doing well. Alana attends preschool and “self-monitors and stops when she runs out of breath,” Amy said. 

Amy and her husband, Josh, plus Alana and daughters Layla, 8, and Corinne, 6, will make up part of Alana’s Army at the Congenital Heart Walk of Southeast Michigan, sponsored by Somerset Collection and held at Boulan Park, 1898 Boulan Drive, Sept. 23. Registration will begin at 9 a.m. 

Other sponsors include DiaMedical USA, Robinson Industries Inc., C.S. Mott Children’s Hospital in Ann Arbor, CampDoc, Merrill Lynch, The Sharper Image, Divinity Homecare and Center for Financial Planning.

Speakers for the walk’s inspirational rally — which will begin at 10:15 a.m. and will be followed by the walk at 10:30 a.m. — include honorary chair Dr. Robert Ross, the director of fellowship programs and the pulmonary hypertension program at Detroit Medical Center Children’s Hospital of Michigan; and Dr. Ming Sing Si, assistant professor of cardiac surgery at C.S. Mott Children’s Hospital. 

The event will feature personal stories from CHD patients and families, as well as a tribute to those who have lost their battle with CHD.

“The Congenital Heart Walk of Southeast Michigan is a highlight of the year in my family,” Melonie Stothers, Congenital Heart Walk chair, said in a prepared statement. “It really defines our fall. There is nothing better than gathering together to share the heart community with the rest of Michigan. We love the activities, games and the fellowship at the walk. Most importantly, we love the opportunity to raise money for much-needed congenital heart defect research and services.”

Alana’s Army has set a goal to raise $7,000 for this year’s walk using social media and donations from friends and family. Amy Stephens said that last year they raised $6,000 for CHD. Alana and her sisters hold fundraisers with their preschool class and soccer team — in exchange for a donation to the walk, they give their donors homemade refrigerator magnets made of Perler beads.

The Congenital Heart Walk of Southeast Michigan is part of an ongoing national effort between the Adult Congenital Heart Association and the Children’s Heart Foundation CHF.

According to the Congenital Heart Public Health Consortium, CHDs are the most common and deadly birth defect in America, affecting approximately 1 in every 100 babies. Each year, an estimated 40,000 babies are born with a CHD in the U.S. There are over 40 different types of congenital heart defects for which there is no known cure. 

Amy Stephens explained that her daughter’s surgery had only been performed in this country for 10 years when Alana had it. 

“For the first time in history, we need doctors with experience in congenital heart defects for adults because kids didn’t survive (to adulthood in the past),” she said. 

The 1.25-mile, family-friendly walk throughout Boulan Park will include face painters, balloon twisters, light breakfast fare and games.The event is expected to bring together more than 1,000 participants from all over metro Detroit. 

For more information or to register for the walk, visit congen italheartwalk.org and scroll down to the southeast Michigan link. For more information on the Adult Congenital Heart Association — whose mission, according to its website, “is to improve and extend the lives of the millions born with heart defects through education, advocacy and the promotion of research” — call (888) 921-ACHA or visit www.achaheart.org. 

For more information on the Children’s Heart Foundation, visit www.childrensheartfoundation.org.