Moebius Syndrome Foundation Administration



SeanSean will be 16 years old in August and will be a sophomore in high school this fall. He loves sports and has his own radio station, 1610 am KPGS, where he broadcasts his high school baseball and basketball games. He plans to attend the University of Missouri to major in broadcast journalism after high school.

Sean’s freshman year was very busy. He was a starter on the academic team, acted in the school play, played the drums in the band, was named outstanding student in geography, was elected to the student council, and went to his first prom! He spends lots of time on MSN chatting with his friends, riding his 4 wheeler, and watching ‘Law and Order.’

Moebius has never held Sean back. He has limited facial expression, doesn’t blink or move his eyes laterally. We did body brushing with Steve Clarke for 18 months a few years ago and that helped with Sean’s facial expression and balance. We miss Steve and are grateful for the help he gave to so many children with Moebius Syndrome. Sean wore braces on his teeth for 2 years to properly align his jaws and had the braces removed in May. He is still allergic to the sun (hydroa vacciniforme) and must stay out of the sun, which is not always easy. He’s handled his sun allergy as he’s handled everything else in life – with courage and acceptance.

Sean is known among friends and family for his quick wit, for keeping others laughing, and for his strong opinions. During a school field trip to the Truman Library last fall he was selected by his class to give a speech by former President Harry Truman. The teacher told me he had to keep telling himself that ‘this kid is a high school freshman.’ Our worldwide Moebius family is very precious to us.