Baby Ella
My blogs
| Gender | Female |
|---|---|
| Location | New York, United States |
| Introduction | Micrognathia, obstructed airway, cleft palate, absent thumbs, underdeveloped radii, fused elbows, congenital heart disease, microcephaly, imperforated anus, astigmatism, hearing loss, and eyes that make your heart melt. Phew…what a mouthful. My name is Ella Rose Monaco and my parents say I’m the best thing that's ever happened to them. I was born with an extremely rare disorder called Nager Syndrome. I’m very special because there are only 90 documented cases in the world. My syndrome doesn’t define me, but means that I have more challenges than most babies. I have a tracheostomy tube to help me breathe and a gastrostomy tube to help me eat. I’m very sweet, sometimes feisty, and always a fighter; never giving up. When I was born the docs weren’t too sure I would survive, but I’ve been proving them wrong ever since. I now weigh a ton, scoot and cruise, and no longer need a ventilator to breathe. I’ve made great strides, but still have a long journey ahead of me. In the year ahead, I will undergo 5 different surgeries and intense rehabilitation. With your support and prayers I hope to continue to defy odds and be the “Rockstar” that I was so fittingly named by my nurses. |