Addison Garvey was born at 40+ weeks on December 4, 2014. Upon delivery, her parents found out that there was something life threatening with their newborn baby girl. She couldn’t swallow, suck or breathe on her own. Addison spent 3 months hospitalized. After having surgery to correct her club feet and endured serial casting on both her legs/feet for many weeks, and undergoing a g-tube placement for nutrition and a tracheostomy for breathing, Addison’s parents were ready to take their baby home. Still not knowing what was wrong with their baby, they traveled to Mount Sinai in New York City, to find answers. There, they met with Dr. Jabs, a geneticist and expert on Moebius Syndrome.
Addison Garvey and her parents finally were given an answer. Addison has Moebius Syndrome. Undetectable in utero and by genetic testing, Moebius Syndrome is an extremely rare neurological disorder. It primarily affects the 6th, 7th and 8th cranial nerves. These nerves control facial movement such as blinking, swallowing, sucking, grimacing and most importantly smiling.
Through her past three years on this Earth, Addison has overcome many obstacles. She was able to come off a ventilator during the day which gave her more mobility. She learned to walk when she was two years old after strenuous daily therapies. She has gone through hospitalizations, MRI’s, bronchoscopy’s and has gone under anesthesia in three years than most adults do in a lifetime. She has come out as a fighter. She continues to impress us everyday with her perseverance and love for life. Addison has a funny personality and doesn’t let anything hold her back from living her life to the fullest. With this facial reanimation surgery, Addison will be able to do something she was intended to do. Something that people take for granted on a daily basis. Addison will be able to smile! It will give a sense of social normalcy to a child who has been fighting for it, for her entire life.
Thank you for taking the time to learn about Addison and her journey.