Ada’s Blessings helps those battling congenital heart defects

Baby Ada

Baby Ada

According to the American Heart Association, congenital heart defects (CHD) – abnormal development of the heart and/or its vessels before birth – range from a repairable small hole in the heart through life-limiting, incomplete heart formation. The Centers for Disease Control estimates that 25% of the 40,000 babies per year born with CHD require surgery, while citing CHD as “a leading cause of birth defect-associated infant illness and death.”

What facts and figures cannot show is the isolation parents experience from living in a hospital as their little one slowly succumbs to their heart defect, nor the despair at not being able to comfort that child because of ongoing medical procedures.

Compounding parental grief when their child passes is a pervasive feeling of being forgotten, with no apparent place to reach out for support or comfort with others of similar experience.

Fredericktown residents Roxanne Sweany and husband, Jordan, lived these experiences, and more, as they cared for their daughter, Ada, who was born with a CHD. Though Ada fought hard, was greatly loved, and received the best of care, she passed on in March of 2017 at the age of only nine months after a valiant seven month battle with her CHD.

During their time caring for Ada at Childrens Hospital of Pittsburgh, the Sweanys were buoyed by the generosity of caring individuals and entities, as Roxanne explained “We lived seven months in the hospital. Other non-profits would come in and give gifts, and that helped a lot. You’re trapped in the hospital all the time and these strangers come and give you gifts, sometimes for children, others for parents…My husband commuted every day, and the gas cards people gave really helped. We felt we wanted to give back, too.”

From these dispiritining times, Roxanne Sweany created Ada’s Blessings to honor Ada because “that’s where my heart is.” Ada’s Blessings, a 501(c)(3) non-profit organization, takes in donations of toys, money, and many other needed items to help support children, parents, and siblings in their battle with CHD.

The organization also provides education about CHD while offering welcoming resources to those who feel isolated in their struggle with the aftermath of a lost battle. “There is this whole community of CHD parents who have lost their babies, and we want to let them know they’re not forgotten,” Sweany said.

With fall and summer being slow times for charitable donations, Sweany “wanted to do something when the need was, not when everyone else was giving.” To counter the downturn in donations, Ada’s Blessings sponsors Ada’s Birthday Party at Childrens Hospital. “We get a list from the cardiac unit for each age group, and what the kids’ likes and needs are. We put that out on Facebook and people send money so I can go get those things, or people donate (toys and other items) as well.” Siblings are also able to pick out a toy of their own, or receive one picked by their parents, as “they may feel like they’re on the back burner, so we make it a point to feel like they’re involved because they get to pick a present as well.”

Roxanne, Jordan, & Ada Sweany

Roxanne, Jordan, & Ada Sweany

Another summer event, and its biggest fundraiser, is Ada’s Blessings Bike Run. The fundraiser kicks off Saturday, August 11 at 10 a.m. at Tradesmen’s Inn, 1769 E National Pike, Scenery Hill, PA. Registration is $20 per driver and $15 per passenger. At noon, Sweany said “kickstands are up. It’s about a 100 mile ride and stops at four or five bars and restaurants along the way. We’ll have a Chinese auction at the end, a D.J., and food catered by Tradesmen’s Inn.” Ada’s Blessings Bike Run also provides “blockers front and rear, and at certain intersections” to keep participants safe while riding for a good cause.

Ada’s Blessings not only helps others, but helps its founders cope in as positive way as possible. “It’s actually helped me get through my grief, and when I’m having a bad day I go to work on something for Ada’s Blessings,” Sweany said. Though there are days that hit her hard, Sweany notes that “it does feel good to get a whole cart of toys to give” and not worry about the expense. Funds and donations are welcomed by Ada’s Blessings all year long. Gift cards to be given to those in need, and checks made to Ada’s Blessings may be sent to Roxanne Sweany, 8 Crawford Road, Fredericktown, PA 15333. Tax receipts are available upon request.

Join the Ada’s Blessings Group on Facebook at: facebook.com/groups/222929584862157/about/

Editor’s Note: Baby Ada, pictured top left with her parents, is also pictured on our cover. Thanks so much to Roxanne and Jordan Sweany for sharing these special photos of beautiful Ada with us.

Story by Keren Lee Dreyer for Pennsylvania Bridges