Addison Garvey – Moebius Syndrome

Moebius SyndromeAddison Garvey Moebius Syndrome: This is Addison Garvey. She was born on December 4, 2014. She is almost 5 years old. When Addie was born she was whisked away to the NICU.

Addison spent her beginning months of life hospitalized. Addie 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! Early on in life, she was flooded with Early Intervention services which include Physical Therapy, Occupational Therapy, Special Education Teacher and Speech Therapy. At this point in her life, we can say that these services have helped her tremendously. She started Kindergarten this year and she is an inclusion classroom. Her teachers say she is the smartest in her class! She gets along well with all of her peers and she absolutely loves school and learning.

Addie has become a sister to both a younger brother AND sister. She enjoys doing ballet and tap. She still continues to love dancing and music. Nothing has held Addie back. She continues to grow and thrive and not let any of her challenges drag her down. Addie is fierce and strong and a role model to everyone around her.

Because of her Moebius Syndrome she has continued on to have many more surgeries. She needed to have her club foot recorrected, eye surgery twice and this past summer we traveled to California for Addie to have facial reanimating surgery with Dr. Panossian! Addie has a confident smile now. We will forever be grateful for the courage and opportunity to give that to Addie.

Addie continues to amaze us everyday and she will continue to amaze YOU as well. With Moebius Syndrome, the sky is the limit and these children’s will and strength is never ending.

Addison Garvey Moebius Syndrome

Addison Garvey Moebius Syndrome

Moebius Syndrome Awareness Day
Moebius Syndrome Awareness Day
Tim Smith
Author: Tim Smith

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