By Lori Berkey, Contributing Writer
Shrewsbury – In 1997, when Shrewsbury resident Dawn King was pregnant with twins, she was told one of them would be born with the complex heart defect, hypoplastic left heart syndrome. Ben arrived with a condition requiring multiple operations and had to be tube-fed for his first three years. King initially gained support from other families who were dealing with congenital heart disease (CHD), but they lived far away.
Five years after Ben and his twin, Erik, were born, King decided to start a nonprofit support organization to help families in the Shrewsbury area affected by CHD. Launched in 2002, Friends With Heart offers resource information, family support groups and activities. The entity raises large sums for research, has an upcoming community awareness event, and recently started a new program for teens with CHD. In addition, Ben’s parents, his older brother, Jeff, and Erik have marched alongside him for years as part of Team Ben at the Friends With Heart Walk, raising money in his honor for CHD research.
February is American Heart Month and Friends with Heart will join the American Heart Association (AHA) as partners with St. Vincent Hospital in Worcester for the Heart Healthy Fair Friday, Feb. 20, in the hospital atrium.
An employee at St. Vincent’s Hospital, King saw the event last year and thought it would be a great way to educate the public about CHD. This year, as a member of the AHA’s Community Team Committee, she and other volunteers will staff a table and feature one of the AHA’s Heart Healthy campaigns, such as exercise, nutrition, smoking or stroke.
The Friends With Heart table will feature CHD information, a raffle, and some special items for purchase made by Friends With Heart members.
“Because it is school vacation,” King said, “we plan to have a few ‘Faces of Congenital Heart Disease’ there helping out and answering questions.”
According to the Centers for Disease Control and Prevention, CHDs affect nearly one percent of births nationwide annually. Twenty-five ercent of those affected have a CHD type, like Ben’s, which is designated as critical.
With the young members of Friends With Heart growing into adolescents, King and other parents noticed the kids’ changing needs. In November, Friends With Heart initiated the new Teen Meet program.
“I started this group because Ben and other teens with congenital heart defects are pretty unique,” King said. “They have endured countless operations, doctors’ appointments, lab work and hospitalizations. Many of these teens have ADHD, behavioral, emotional or learning disabilities or other physical disabilities due to their heart situation. Others want to step up and give support to their peers.”
Teen Meet is a place where the teens can talk, share, listen and do something fun together without judgment. Parents meet at the same time separately from the teens. The parents hope the group will build camaraderie between the young adults so they can help each other as they transition into adulthood.
With good care and support, Ben is thriving.
“Ben is doing really well. His health has been good,” King said, adding that his ongoing condition will probably necessitate his pacemaker being changed in the next year or two.
Ben and Erik are juniors at Shrewsbury High School and continue to participate in local fundraising walks. Jeff, a junior at University of New Hampshire is participating in a fundraiser for the American Heart Association at his school.
King’s efforts are not waning either.
“Ben has kept me going, of course,” she said. “I have learned to advocate for him and want to continue to empower other parents to do the same. This will allow us to teach our heart kids to become strong self-advocates.”
The members of Friends With Heart are an additional source of strength for Dawn.
“The best part of being involved with Friends With Heart is all of the people that I have met -like the wonderfully brave families who give the best care they can for their Heart Warriors.”
For more information, visit www.friendswithheart.com.