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Souleigha, who celebrated her first birthday in December 2010, was born with hypoplastic left heart syndrome. The more her mother, Denise, learned about Souleigha’s defect and how prevalent yet underfunded CHDs are, the more she wanted to help raise awareness and funds for the cause.
Denise and her husband Ken started Team Juicy, named after “Juicy,” Ken’s niece’s nickname for Souleigha’s adorable, full cheeks. Twenty-two members strong in their purple shirts, Team Juicy walked in the inaugural Delaware Valley Congenital Heart Walk on October 23, 2010, where they were the top fundraising team. “It felt so wonderful to come together to rally” for CHD awareness, Denise says.
Denise strongly believes in the coming together of ACHA and CHF, for Souleigha’s sake and for other babies and children like her. “I see CHF as my daughter and other childrens’ present and ACHA as her and others’ future,” Denise explains.
As for Souleigha, a very serious little girl according to her mom, she’ll be at the walk again this year on a mission. “Maybe, in some way, she’s aware of an important mission bigger than herself,” Denise says. The goal of that mission? A brighter future for everyone in the congenital heart community by raising awareness and dollars for education, research and advocacy.
Amy will be celebrating her 30th birthday this year by raising money for ACHA at a Philadelphia Phillies game. Her sole mission: to help others learn to live with CHD throughout their lives. Amy, who was born in 1981 with Tetralogy of Fallot and an absent pulmonary valve, was a co-chair of the inaugural Delaware Valley Congenital Heart Walk in 2010.
At 4 years old, Amy had open heart surgery. She says she feels she had a completely normal childhood and went about her life with little to no complications. In 2006, Amy was told she was doing remarkably well—even better than others with TOF, and especially with the extra complication of the missing valve. Just one year later, Amy was leading a busy and happy life and expected to hear how well she was still doing at her next doctor’s visit. Instead, she says, it was the worst day of her life upon hearing the news she needed another open heart procedure. “I was told I had severe regurgitation, which I didn’t even know I had before,” Amy says. The news changed how she viewed herself and her life. Twelve weeks after the appointment, an MRI showed her heart was handling regurgitation well, and the risk of another open heart surgery was not worth it at this time.
Amy says that at times, her CHD makes her feel isolated and terrified, but luckily, other ACHA members in similar situations have been there for her as necessary support. For this reason, Amy gave back to the organization by serving as co-chair of the inaugural Delaware Valley Congenital Heart Walk on October 23, 2010. “The 2010 Delaware Valley Congenital Heart Walk was perhaps the most inspiring event of my life,” Amy says. “Before ACHA, I didn’t know a single person with CHD. We had over 130 walkers who were there to celebrate someone with CHD. As a group, we united to prevent others, both adults, children, and their families, from feeling so isolated and terrified.”
Born on January 13, 2009, Owen was a “pleasant surprise,” according to his mother, Beth. While Owen was tested in the womb by a pediatric cardiologist to rule out a variance, as well as a smaller infant than her other sons, Beth says when he was born he looked “the picture of health.”
Everything changed three days later when Owen began to have difficulty breathing and stopped feeding. As his conditioned worsened, Owen visited multiple hospitals, ending up at Children’s Hospital of Philadelphia, where he was ultimately diagnosed with coarctation of the aorta and bicuspid aortic valve. “It took a week to stabilize his condition to the point where he could have the life-saving operation to fix the coarctation and establish proper blood flow to his body,” Beth says. All told, Owen spent more than 100 days in the CICU for the four months he was at his home hospital of Nemours/Alfred I. DuPont Hospital for Children in Wilmington, Del., having several operations.
Now, Beth says, “Owen looks like the typical 2-year-old, albeit with a fabulous array of scars across his body. His heart is doing well, he enjoys chasing his older brothers, and he has become an inspiration to us.”
Beth and her family started Team Owen at the Delaware Valley Congenital Heart Walk; in 2010 they had 11 walkers, which increased to 25 members by the 2011 walk. Team members include family, friends and some of Owen’s doctors. Beth says she and her family are always so touched by the love and support. And, Beth says, “now that I am a mother of a survivor I will always support and help bring awareness to CHF and ACHA. If it wasn’t for the knowledge, talent and support of Owen’s medical team, he would not be here today.”
Jeanette started having chest pains in 1995, and her life changed in April 1996—when she had a heart attack. Jeanette left her job in payroll accounting at a large publishing company on disability, never to return.
In 1997, at age 40, Jeanette’s cardiologist discovered her heart defect. Since he was unfamiliar with the defect, Jeanette was sent to a CHD specialist at Children’s Hospital of Philadelphia (CHOP), was diagnosed with anomalous malformation of the right coronary artery, and had open heart surgery to repair the defect.
Jeanette was told her repair might fail, and as of today, it has. For instance, Jeanette says, “The artery has expanded and produces only clots. I am unable to take blood thinners because of an allergic reaction. I had a few strokes and the edema has taken over.” She says she has good days and bad days.
An important connection with ACHA was made when Jeanette was invited to a CHOP event at a museum for children—assuming that she was a child. While Jeanette and her husband quickly realized the event was not for her, it was there that they met ACHA President/CEO Amy Verstappen. Subsequently, Jeanette says ACHA has educated her about her defect and how to participate in her treatment plan and care. Plus, “I have met some wonderful people who let me know that this was not a death sentence but a mission to live,” Jeanette says.
And Jeanette believes in the important mission of the Congenital Heart Walks. “So many people live in this world without proper health care and who, like me, might not know that they have a defect,” she says. “Once they find that they or their child have a defect, they must have an organization (ACHA and CHF) that offers support and information that they need to survive.”
Cara was born in 1965 and received her diagnosis at about 5 weeks old after her pediatrician heard a murmur. At age 3, she went into congestive heart failure and had palliative surgery. By age 9, she was ready for her total corrective surgery, and subsequently received follow-up throughout her childhood.
Today, Cara sees her ACHD doctor annually, and per her last MRI and stress test, says she is doing “exceptionally well.” She has two daughters who were born without complications and no restrictions on exercise.
Cara learned about ACHA through a nurse at her cardiologist’s office. “For the first time in my life I feel like I have resources, support and inspiration from a community outside my family,” Cara says. “What does this mean to me? Comfort, relief and empowerment.”
She began her involvement with Congenital Heart Walks in 2012 by forming the team “New Hope for Hearts!” at the Delaware Valley Walk. In her inaugural year, Cara was the top individual fundraiser and “New Hope for Hearts!” was also the top fundraising team.
Uniting people of all ages who have been impacted by CHD at Congenital Heart Walks is of incredible importance to Cara. “All of my life I wanted to connect with others that have gone through this similar situation,” she says. “I want to reach out and do something to comfort and reassure children and parents, assuring them that they can get through this and come out strong.”
Aaron, who celebrated his fourth birthday in May 2012, is “smart, funny, active, and most importantly, happy,” according to his mother Erica. But when she found out about Aaron’s heart defects at her 19-week ultrasound, the mood was not as bright. “Of course, we were devastated at the news,” she says. “But after we met with a pediatric cardiologist later in the week we began to have a little hope.”
While Erica says it’s been a difficult road at times—with three open heart surgeries, multiple procedures, and the uncertainty that lies ahead—Aaron is doing well today.
Erica made a connection with the president of Pennsylvania’s CHF chapter at Congenital Heart Lobby Day in 2009. She become involved quickly and currently sits on the CHF-PA board. “CHF’s mission is incredibly important to me—without research projects like the ones they fund, my son would not be alive today,” Erica says. “As my son grows older, I plan to look towards ACHA for guidance and support in his adult years.”
Erica spoke at the first Delaware Valley Congenital Heart Walk in October 2010 and also attended in 2012. While she is not able to sit on the planning committee due to other CHF-PA board duties, she is thrilled with the success of the walks and the awareness and funds raised.
“Raising awareness, funding research, and providing support to those affected by congenital heart defects is incredibly important,” Erica says. “While CHDs are by definition present at birth, the need does not stop there. Support is needed throughout a person’s life—to ensure that those affected can live long, productive lives.”