Amelia's journey began with a genetic "activation event" that is believed to have triggered her rare progressive Unknown Interstitial Lung Disease (ILD). Alongside the diagnosis of Unknown ILD, her medical team also uncovered Pulmonary Fibrosis, Non-Cardiac Pulmonary Edema, Chronic Lung Disease, Asthma, Epilepsy, and the KCNQ1 Gene (Long/Short QT), which is connected to her previous cardiac arrest's she survived. Amelia is actively involved in multiple research studies to unveil the underlying cause of all her conditions, given their exceptional rarity. Unfortunately, there is no cure available for her conditions, only symptom management. Despite the uncertainties surrounding her health, Amelia continues to embrace life with a smile, dance, and laughter, while relying on continuous oxygen supplementation (24/7). While a lung transplant and other surgeries may lie ahead, she refuses to let her reliance on oxygen define her.
In 2022, Superhero Amelia had her moment to shine at the JoJo Walk. The timing of the walk coincided the anniversary of the activation event of her non-curable diseases. Amelia's journey began when she went into cardiac arrest and respiratory arrest on her first birthday, and it has been a lifelong battle since. Even during numerous tests, IV’s, and continuous hospital visits, The Live Like JoJo Walk symbolizes Amelia's resilience on a daily basis. The Live Like JoJo Walk takes place a week after Amelia's birthday, coinciding with the anniversary of her health journey. The walk offers Amelia and our family the hope we need and creates lasting, beautiful memories. The JoJo Foundation has taught us to live in the moment since our life with Amelia can change so quickly. We express our heartfelt gratitude to the foundation for being a constant source of positivity, hope, inspiration, and support for our family. “Moments Counts” - The Live Like JoJo Foundation
Let's raise some funds for Superhero Kids and the Live Like Jojo Foundation!
