Moebius Syndrome Foundation Administration



Jessica was born 4/14/01 full term at a petite 5lbs 8oz. She had bilateral facial nerve paralysis and crossed eyes, as well as short pinky fingers and pinky toes. Early on she had trouble gaining weight and was down to 4 lbs 13 oz at one month of age.

 She was diagnosed with malabsorption of carbohydrates and a severe lactase deficiency (lactose intolerant) and we started putting LactAid in her breast milk. During the early weeks, we noticed she wasn't getting full suction on her bottle of milk, so her Daddy experimented with several types of bottles. Ultimately by forcing her cheeks to gain closure on a higher domed bottle, she was able to drink from a bottle - what a lifesaver that was! Jessie steadily began gaining weight, but the pediatrician could not explain the lack of smiling until about five months of age. Once she received her diagnosis of Moebius syndrome, she began seeing a Pediatric Ophthalmologist. At eight months of age (and the day after Christmas in 2001) Jessie had her eye surgery to recess the medial rectus muscles. Once she could finally see straight, her development really progressed! She got her glasses at about 15 months of age and wears them still.

At 22 months, Jessie began seeing a speech pathologist (in our home) through the "Birth to Three" program in Madison, WI. She loved working with "Speech Janet" and it was truly amazing watching Jessie learn to communicate and verbalize her wants and needs with us.

 In 2002 Jessie attended her first Moebius Syndrome conference in Illinois and made several friends. She had so much fun at the 2008 and 2010 conferences and is looking forward to seeing all of her friends again! It's awesome to see these kids grow and develop their personalities - they are all truly amazing.

 Jessie loves to do art projects and has an appreciation for music - both singing and dancing. Additionally, Jessica is a member of the Keiko Shin Karate Academy and has recently earned her brown belt. In 2009 she earned a silver medal at the 2009 NKF National Karate Tournament and has also medaled in several other karate tournaments in Florida.


Submitted July 2010


12th Moebius Syndrome Conference
12th Moebius Syndrome Conference

The 12th Moebius Syndrome Conference will be held at the Long Beach Hilton, Long Beach (Los Angeles County), California, Friday July 15 – Sunday July 17, 2016.

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