Shaden Sabah holds her birth report with three letters PKU in Al Ain hospitals before Eid 8 years ago. The coma state for the first week made her mother’s heart beat alarmingly, causing her princess to sleep like this until a phone rang telling her that this girl was destined to face PKU.
Shaden is a strong and determined girl, resisting grabbing a little protein that fills her stomach more than anything else.
However, sometimes you feel miserable and disconnected, and realize that living the right way with PKU is the only recourse. She painted her pain, tore through the turbulent patterns and colored it with hope and prayer. She stood tall among her colleagues, asking for more fruit to fill her lunch box. She grew up a 4th grade student who survived the diversity of nearly 109 nationalities simultaneously in her school as she used her wonderful English to talk about herself, her identity, and her situation. She is still shy and reserved as she developed her YouTube channel with a voice that can connect her desires and emotions to the whole world, and her passion for animals. The hope of many children with rare diseases living in the UAE has been thriving with her big heart. The United Arab Emirates is where Shaden was born, diagnosed and embraced as a precious citizen and patient. The United Arab Emirates, where Shaden stood for the national anthem, chanting: “Live my country,” in a gesture of pride and dignity for the nation, that honored rare diseases, revealed their bitterness, and turned them into opportunities.