Lizzy’s lifelong journey with Long QT Syndrome

Lizzy's journey with Long QT Syndrome began at birth when a nurse noticed her low heartbeat, leading to comprehensive monitoring and the identification of her arrhythmia. She was immediately transported to the Children's Hospital of Philadelphia, where she was diagnosed with Long QT Syndrome Type 3.

Growing up, Lizzy saw herself as a "normal" kid, despite the restrictions imposed by her condition. Everywhere she went, an automated external defibrillator (AED) accompanied her, but she didn’t realize its meaning until later in her childhood. Lizzy's understanding of her condition deepened in second grade when she saw her picture on a substitute teacher's clipboard, labeled as a “health risk.”

Lizzy didn’t want to be seen as different, often underselling her condition to avoid being seen as a ticking time bomb. When kids at school would bring in sweets for their birthdays, Lizzy would often say she was allergic to chocolate rather than going into the details of her condition and the potential impact of caffeine on her heart.

Lizzy's ability to embrace life was greatly influenced by her mother. Recognizing the importance of providing Lizzy with a sense of normalcy, her mother enrolled her in theater and Girl Scouts, allowing her to participate in activities that wouldn't interfere with her condition. Lizzy's brother, Ben, also played a significant role in her life. Despite feeling guilt about his own good health, Ben stood by Lizzy's side, offering support through every challenge.

At the age of 11, Lizzy faced a pivotal moment when her pacemaker stopped working without alerting her doctors. Emergency surgery was required to replace the device and ensure her safety. Determined not to miss her school musical, Lizzy convinced her doctors to delay the surgery until after the performance, under the condition of being constantly monitored. Thankfully, she underwent the surgery without any complications and was even granted a wish through the Make-A-Wish foundation.

For Lizzy’s wish, she decided to meet her idol, Bethany Hamilton. Bethany, a professional surfer who had overcome adversity after losing her arm in a shark attack, inspired Lizzy to face her own challenges head-on. Lizzy got to spend a day surfing with Bethany in Hawaii, and during their time together, learned the importance of embracing one's unique journey and finding strength in the face of adversity. Lizzy left the experience filled with gratitude for her life, despite the hardships she faced.

Managing her condition requires a daily regimen of medications, which often leaves Lizzy fatigued and nauseous. Despite these challenges, Lizzy remains resilient, pushing forward and striving to make a positive impact on the lives of others. Helping others has become her greatest pleasure, and she actively works with the Make-A-Wish Foundation, volunteering her time, giving speeches, and sharing her story to bring hope to children facing their own battles. She has already raised $5,000 through MAW Founded, a club she founded at her high school.

Beyond her efforts with Make-A-Wish, Lizzy finds pleasure in spending time with friends, and taking care of her three rescue dogs. She also has a deep love for music and theater. Lizzy wants to thank her entire family who have extended unwavering support throughout her journey with Long QT Syndrome. Her mom, brother, grandparents, stepdad, and friends have all showed compassion and understanding, and have stood by her side during her hospital stays and recovery periods.

To others who are newly diagnosed with Long QT Syndrome, Lizzy's message is one of hope and resilience. She urges them to embrace their unique journey and recognize their challenges do not define them. Lizzy encourages others to approach life with gratitude, knowing that every day is a gift.

“I hope to help people realize they are not alone in their fights. Though it can be tough, I feel lucky to have received my diagnosis. With the diagnosis of Long QT, I hope you can achieve some sort of peace, knowing that you are not going through this alone. Some days can be challenging, but I thank my lucky stars for being able to experience both the bad and the good days. I hope that my story can make others feel seen and understand that they can still live a great life, despite their diagnosis.”

To learn more about Long QT Syndrome, visit The SADS Foundation’s organization’s website at: www.sads.org.