Hello, I’m Kamiyah Jones, and I am 2 years old. I was born on March 6, 2021, to my loving parents, 2 sisters, and 3 brothers. After birth, I spent two weeks in the NICU due to swallowing issues. Everything was going well until I turned 3 months old. My mom took me to the Kingwood emergency room, and I was later transferred to Texas Children The Woodlands, where an EEG confirmed seizures. I was then moved to Texas Children’s main campus. After two weeks, I received my first diagnosis of infantile spasms and floppy airway. Doctors provided an NG tube for eating and medication. At 4 months, I was misdiagnosed with Zellweger, leading to a loss of my voice. From September 3, 2021, to January 25, 2022, I spent 144 days in the ICU due to Rhinovirus, facing intubation, failed extubations, hair loss, and moments doctors considered giving up. I was diagnosed with developmental delay, dysautonomia, chronic respiratory failure, congenital disorders of glycosylation (CDG), Jamuar Syndrome (UGDH), and epilepsy. On December 28, 2021, I was trached, freeing me from mouth tubes. After four and a half months in the hospital, I celebrated my 1st birthday at home. In the first 6 months back, I visited the hospital at least once or twice a month. Now, at 2 years old, I am thriving against all odds. My mom started a non-profit called “GeneticsRose,” and our first event, a sneaker ball, will be in March 2024.