I walk because I know that with every step, I am saving lives.
This fundraising event is very personal for me and my family. I have 2 beautiful nieces, both who have various congenital heart conditions. Here are their stories:
Belicia's story:
Belicia was born May 21st, 2004, at Elmhurst Memorial Hospital. The morning after her birth, medical staff noticed that after feeding, Belicia was turning blue around her mouth. She was outfitted with a pulse ox monitor, and her oxygen saturation levels were deficient. It’s at that point that she was taken to the NICU at Elmhurst Memorial and was diagnosed with a congenital heart disorder. Almost immediately, she was transferred to Loyola Hospital's NICU in Maywood, IL. With the number of medical issues growing, Belicia was kept in a paralytic state to stabilize her and strengthen her in preparation for possible heart surgery. Belicia went through multiple tests and was diagnosed with the congenital heart disease known as, Tetralogy of Fallot. Loyola hospital could not meet Belicia's needs, and she was once again transferred, this time to HOPE Children's hospital in Oaklawn. She was in the care of The Heart Institute for Children.
Belicia was tested for genetic disorders while hospitalized at HOPE Hospital and was diagnosed with DiGeorge syndrome when she was a week and a half old. She had a cardiac catheterization performed, which proved her need for heart surgery. She underwent her first surgery, a BT Shunt, at two weeks old. We were so very proud of our brave little fighter, as we finally brought her home at three weeks old. She was still in need of feeding tubes, oxygen, and much medical attention, but she was finally home! Belicia has been through countless medical procedures, doctor appointments, dental reconstructive surgeries, and multiple open-heart surgeries. Belicia has developed and is being treated for anxiety that is at times crippling due to all of her medical traumas and health conditions. She had her latest heart surgery in the summer of 2017 (a Melody Valve placement) via cardiac catheterization. We also took on Homeschooling as a means of educating Belicia due to many learning challenges stemming from her condition, but also because it was so challenging to keep up due to trauma, Dr/medical appts, sickness, etc. We are delighted and proud to report that she is a beautiful and smart 20-year-old girl in an excellent state of health. Belicia's passions are theater, hanging out with her friends, and collecting and knowing everything about My Little Pony. We are more than amazed at her strength; she is a true inspiration to us and everyone that knows her! Belicia has more heart surgeries to face in her future, but for now, we are enjoying a little downtime in good health.
Olivia's story:
Olivia was 3 months old when her pediatrician heard a heart murmur. We didn’t know what that really meant at the time. First, we needed to get an echo and then meet with a cardiologist. At the appointment, we learned that Olivia had an atrial septal defect (ASD). This is a common defect and usually this area of the heart closes when the child is born. Though, in some cases it doesn’t close and in some cases it closes after birth. Olivia had a 10 mm hole in her atrial wall which is considered a moderate size. The doctor told us that more than likely she would need surgery if it didn’t shrink. We monitored it for another year at which point we went back and her hole decreased to 7 mm. Even though it shrank, it is still considered moderate and operable. Another year passed and it’s now 5-6 mm. Her hole has continued to shrink, though now we’re in a borderline state - it could be operated on or it could be a wait and see situation. At this time, there really aren’t any answers for us until more time passes. We will continue to monitor yearly to determine next steps. For now, she is healthy but the weight of not knowing an outcome is difficult. We pray there will be no long term effects. While it is difficult to wait, we are also thankful for the expertise of her doctor to guide us along this journey as it’s never an easy journey.
Your donation will fund groundbreaking research that literally keeps hearts beating and helps people have longer, healthier lives.
This year, as we celebrate the Centennial of the American Heart Association, we will move health and well-being forward in important and critical ways. This relentless pursuit will continue until heart disease and stroke no longer exist.
Have a heart and help me reach my goal today.
