The story of Kash
Kash and his identical twin King were born at 24weeks on February 25th, 2022 .Our NICU journey was full of uncertainty as the boys struggled to be able to get off the ventilator and make progress. After 320 days, NICU, PICU stays, multiple surgeries , genetic testing and two hospitals. We finally got our answers the boys had Brain, Lung and Thyroid Syndrome a condition caused by the NKX2-1 mutation. Due to the syndrome and prematurity they developed several other conditions Chronic Lung Disease, Chronic respiratory failure, hypothyroidism, and Chorea movements, and a Grade 2 bilateral brain with ventricular damage. King passed away at 13 months old due to complications. Kash our surviving twin has made great progress he is currently G-tube, oxygen and ventilator dependent. We struggle with many challenges but is all about the small victories. Kash is currently followed closely by a pulmonologist, neurologist, neurosurgeon, pediatric gastroenterologist, pediatric ENT, endocrinologist and PT, OT , speech and feeding therapist. His story is not over this is just the beginning.