Adeline Kathryn Jones: Adeline, and her twin sister Eliza, were born on July 1, 2014, in Portland, Oregon. Having twins was a complete shock to her father and me! My pregnancy was very healthy, but there was some time when Adeline was not showing the amount of expected growth, and so the doctors diagnosed Intrauterine Growth Restriction. She was always smaller and less active than her sister Eliza. The girls were born at 37.5 weeks. Adeline was 5 pounds, 2 ounces, and Eliza was 7 pounds, 4 ounces.

Click on the photo to read her story.

Alex Barker: Who wouldn't want to be born without a disability? Me...I didn't have a choice. Everything or mostly everything that I've wanted to do is because I saw my peers doing the same thing and I though...Hey I could do that. I went off to college, university and had the opportunity to go and study in different countries. I even live independently. Well all my friends do so why can't I?

​Click on the photo to read Alex's story.

alt="Adeline - Moebius Syndrome"

Logan: Logan was born on 19 January 2006. When he was a year old, he was diagnosed with a very rare syndrome called Moebius. As a first time mother, I was in shock as I have never heard of this condition and living in South Africa, there were no support groups due to the rarity of this condition. The pediatrician, who diagnosed Logan, said that in the 20 years of practicing medicine, he had only one similar patient with this rare condition and that was the only reason he could diagnose Logan.

​Click on the photo to read Logan's story!

Aiden Lucid: I'm 28, from Co. Kerry, Ireland and have had Moebius Syndrone since birth. Because of Moebius Syndrome, I cannot smile or move my eyes, my left hand is deformed and I had to have numerous operations on my feet as a child due to having clubbed feet. I did not let my disability deter me, however. I have gone to college and completed numerous home study courses, obtaining dilplomas of distinction in creative writing, freelance journalism and writing for TV & Radio.

​Click on the photo to read Aiden's story!

alt="Addison - Moebius Syndrome"

Our Stories

Addison Michaela Garvey: Addison 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.

Click on the photo to read her story..

Alt="Aiden-Moebius Syndrome
Alt="Alex - Moebius Syndrome"
Alt="Alexis-Moebius Syndrome"

Alexis: Alexis rubi was born on 7/30/06. She was 6 weeks premature and weighed 6 lbs 4 oz and was 18 1/2 in long. She was our perfect angel but soon right after the doctor notice her left ear wasn't quite developed and she had skin tags on both sides so they decide it would be best to get a ultrasound of her kidneys, and some other test but everything was fine, I was soon to take my princess home. I had been breastfeeding when we realized she was tongue tied and couldn't latch on properly that's when it started,

​Click on the photo to read Alexis's story.