Concert helps nonprofit providing heart surgeries
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STEUBENVILLE -- A benefit concert at Bennigan's Steubenville on Sunday raised awareness of an international nonprofit organization that seeks to provide lifesaving heart surgeries for babies with Down syndrome.
Commemorating October as Down Syndrome Awareness Month, Hearts of Joy International hosted the concert, which offered an original music performance by John Paul Von Arx, a Franciscan University of Steubenville alumnus and Steubenville resident. Information on Hearts of Joy was available through pamphlets and through the organization's founder, who attended the concert.
It was a "wonderful night with a wonderful message," according to Von Arx, a member of Hearts of Joy's board of advisers since January. Before the concert, Von Arx described how Hearts of Joy's mission is to aid babies with Down syndrome in developing countries, who are often medically neglected due to lack of resources and general stigma.
Von Arx said 50 percent of babies with Down syndrome, a genetic developmental condition caused by an extra copy of chromosome 21, are born with a congenital heart defect. This condition requires surgery within the baby's first year after birth to prevent life-threatening effects.
A combination of stigma and scant medical resources result in individuals with Down syndrome or other disabilities being "actively discriminated against" with low medical priority, Von Arx said.
"We (in Hearts of Joy) try to bridge that gap and specifically seek individuals with Down syndrome out in impoverished communities that would probably die (otherwise)," Von Arx said, adding that the nonprofit does screening to find the babies who need the operation.
"These are really life-saving heart surgeries."
Lauren Costabile, Hearts of Joy's founder and executive director, said the nonprofit has aided babies in Uganda, Mexico, the Philippines and India through five partnered hospitals. Currently, the organization's website says it has contributed to the healing of 63 hearts since its founding in 2019.
Individuals can apply for the program through various means, and different countries have social workers and nurses who work for Hearts of Joy. Those workers, Costabile said, "facilitate the on-the-ground work finding kids, getting their hearts checked at the hospital, counseling the families (and) preparing them for heart surgery."
Costabile said she has a long history of working with special needs children. In 2017, she traveled to Uganda, where she witnessed the treatment of special needs babies and met a specific 6-month-old baby with Down syndrome. Costabile said of that baby: "It started with her. I felt a call to help her and that took me on a journey that grew into Hearts of Joy."
What sets the nonprofit apart is that they do not send their own officials out to the different locations. Rather, they work with each country's existing medical personnel to empower the communities.
"I believe (that) in order to empower the culture and really raise awareness for the dignity of these children, it has to come from the native healthcare systems," Costabile said. "So, we're working to teach and educate them about the value of these children (and) we work very closely alongside them."
Available to purchase as a donation to the nonprofit were handmade items from Uganda, including scrunchies, purses, spoons and "Joy Bracelets."
Costabile said, "Part of the program, when the moms are in the hospital because it's a very stressful time for them, we have them create these bracelets, and it's like a tactile activity that helps ease their anxiety and stress. We put on music and sing, and it's like this joyful moment of building community with them, and I give them a certain amount of the bracelets that they can sell in their own country to get money to pay for the medications for their child."
Von Arx said he fully supports Costabile and her mission, and he spoke about his own brother, Sam Von Arx, who has Down syndrome. One of John Paul Von Arx's songs performed Sunday was called "He's Different," which was written about his brother. The song's music video, featuring Sam Von Arx, was released two weeks ago, and has earned about 15,000 views.
John Paul Von Arx said that, prior to his brother being born, he lacked experience with special needs individuals and did not know how to treat them. However, he came to realize after his brother's birth: "'Oh, he's my brother,' and I treat him like anyone else. Maybe I just need to be ... a little bit more articulate and just be a little more patient.
"I wrote 'He's Different' reflecting on the fact that, yes, he's different (and) yes, he has Down syndrome, but he's also different in ways that I wish I was different. I wish I was as peaceful and as free as him."
Von Arx, who works as coordinator of worship at the university, said the goal of the "He's Different" music video is to give hope to expectant parents of Down syndrome children amid any uncertainty and anxiety.
"I just want them to see a snapshot into what the beauty (Down syndrome children's) lives are," Von Arx said.
Individuals can donate to Hearts of Joy International by visiting heartsofjoyinternational.com/donate/. The "He's Different" music video can be viewed at johnpaulvonarx.com/hes-different.