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Yaya's story comes from our daughter Amelia, a courageous warrior battling a rare disease. Amelia's journey began with a genetic "activation event" that is believed to have triggered her rare progressive Unknown Interstitial Lung Disease (ILD). Alongside this diagnosis, her medical team also identified Pulmonary Fibrosis, Non-Cardiac Pulmonary Edema, Asthma, Epilepsy, and the KCNQ1 Gene (Long QT), which relates to the cardiac arrest’s she has bravely survived. Amelia actively participates in several research studies aimed at uncovering the underlying causes of her exceptionally rare conditions. Unfortunately, while there is no cure, she receives only symptom management. Despite the uncertainties surrounding her health, Amelia faces life with a smile, dancing and laughing, while relying on oxygen therapy support 24/7. Although a lung transplant and other surgeries may be in her future, she refuses to let her dependence on oxygen therapy define her.
I wanted to craft a story that helps children grasp the importance of inclusivity, awareness, and acceptance while celebrating the strength and resilience of those who face tough challenges. Yaya's journey serves as a testament that everyone possesses unique abilities and can achieve remarkable things, regardless of any limitations. I hope this story inspires young readers to be kind, compassionate, and accepting of everyone, no matter their differences.
"Yaya" is the affectionate nickname that Amelia's brother Asher, lovingly called Bubba, has given her. Their special sibling bond shines brightly throughout our family’s journey. Asher brings joy into Amelia's life, serving as a vital “bridge” during tough times. There are moments when Amelia is hospitalized and feeling quite unwell, yet her determination to stay strong is fueled by her love for Bubba. We endearingly call Amelia our little Koala, as she captures the essence of a Koala Bear. She consistently offers warm hugs, brings tranquility in stressful times, displays remarkable adaptability, showcases resilience, and spreads her happiness and gentle spirit to everyone she encounters.
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