Shrewsbury – Ten years ago, when Shrewsbury resident Dawn King was pregnant with twins, she found out that one of the babies would be born with a complex heart defect called hypoplastic left heart syndrome.
Ben came into the world with a left ventricle that was like a deflated balloon, Dawn said. He underwent a series of operations and had to be nourished with a feeding tube for the first three years of his life.
Dawn found extended family to be one source of support, but talking to people who were going through the same situation was invaluable. Having been involved with a Connecticut-based support group for parents and caregivers of children with heart disease, Dawn decided to start a group closer to home. Five years ago, she founded Friends With Heart.
Friends With Heart is open to parents and caregivers of children with congenital heart disease or other heart conditions. The organization off ers a support group, information and resources, and helps match parents together to share experiences. Quarterly informative meetings or workshops are held.
About once a month an event of some sort takes place, whether it's a picnic or party, activity or meeting. The group receives support from the staff of Child Heart Associates, a group of cardiologists based in Worcester.
Although Friends With Heart is meant to support parents and caregivers, the group ends up being a support for the kids as well, as families convene for parties and other activities. Children get the chance to jump in the water with other kids who have similar scars from surgeries. They get to play with kids who have the same health challenges that may prevent them from having the physical stamina needed to keep up with unchallenged kids during sports.
Ben is now doing very well, Dawn said, and doing activities with kids who at are his pace helps.
"Just to hang out with other kids who are like him and that he can keep up with and feel successful at something – I think that's a big deal," she added.
Another major activity Friends With Heart gets involved with is the annual Heart Walk in Worcester to benefit the American Heart Association. The group has arranged for the funds they raise to be earmarked for congenital heart disease research.
This past April, Friends With Heart had 22 families with a child with heart disease who participated in the walk. Dawn and her family walked with Team Ben, which included Ben's twin brother, Erik.
According to Dawn, this year's Friends With Heart team raised more than $40,000 toward the cause.
"It's pretty impressive for us as parents when they have all these large companies come in, and if you look, we're like the second-ranked team … so we're proud of it," Dawn said.
Dawn said she'd like the Friends With Heart group to achieve official nonprofit status as an organization so that the group can collect tax-exempt donations and set up a foundation to support families who have financial hardship from the bills that stack up when a parent quits work to care for a child. She said the group would welcome a volunteer who is knowledgeable about the process of forming a nonprofit entity to aid the group in that endeavor.
For more information, to volunteer or to join Friends With Heart, contact Dawn King at [email protected] com or 508-842-1636.