Moebius SyndromeAddison was born on December 4, 2014 in Long Island, New York. After Addison was born, she was whisked away to the NICU. Addison spent most of her life hospitalized. During her first three months, Addison was in four different hospitals. In addition to the abundance of testing (some of which were invasive), Addison underwent a tracheostomy to stabilize her ability to breathe and G-tube surgery to provide proper nutrition. Additionally, she completed serial casting for her bilateral clubfoot, followed by a tenectomy procedure on each foot. Addison finally arrived home in time for her 3 month birthday. After we were home, we visited Mounti SInai and met with Dr. Jabs who officially diagnosed Addie with Moebius Syndrome.

Since Addie has been home she has been thriving! She receives Early Intervention services which include Physical Therapy, Occupational Therapy, Special Education Teacher and Speech Therapy. Addie is a very happy baby. She can clap hands, say “So Big!” and wave hi and bye. Addie absolutely LOVES Elmo. She loves to watch people around her, read books and turn the pages herself and snuggle. Addie has a fun-loving little spirit. She makes everyone around her smile. She is beginning to stand with assistance and has mastered sitting up on her own. We are so proud of Addie and love her more than anything. – Mom

Tim Smith
Author: Tim Smith

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