people_chelsey

Believe it or not, there was a time when hardly anyone knew about Moebius syndrome. (Not even many of us who grew up with it!) That all changed in 1995...

While Moebius syndrome was medically "on the map" with its' description written by a Dr. Moebius 'way back in 1888, nobody outside of medicine really knew much about it. Even though Moebius is both congenital (you're BORN with it) and fairly obvious (we DO sort of 'look alike!:)), many adults with Moebius never learned of their diagnoses until they were adults. (Go figure!) Even parents of young children have been routinely told "oh, you'll NEVER meet anyone else with it". There even were people with Moebius who shared the very same doctors... and those doctors never even told us about the other person! (We had to become our own detectives!)

Finally with the advent of groups like NORD (National Organization for Rare Disorders) and AboutFace, there was a way for people to network. By 1991, Chelsey's mom (Lori Thomas) and Vicki McCarrell had started a gras-roots support group for people with Moebius syndrome and their families. Every time a name was added to the list, we cheered, for that was one more person who would NOT be alone as we all, individually, had once been.

Vicki typed up the newsletter (Moebius Syndrome News) and mailed it out ... slowly, the fledgling group learned of more people both in the US and in other countries.

By 1994, a foundation was being established. Another family, Rich and Cathi Campbell, from New York, were also parents of a child with Moebius syndrome. Through their organizational efforts, Rich and Cathi, and Vicki and Lori worked together to establish what we know know as the Moebius Syndrome Foundation. Vicki and Lori had organized the first American conference in Los Angeles. (the Moebius Support Group in the UK already had had at least one gathering!)
Names of individuals affected by Moebius were coming in a little faster...

Chelsey wanted to be able to smile; Lori knew that not just "any" surgeon could do such delicate surgery. Through both Lori and Vicki's efforts, Chelsey's quest to have 'smile surgery' (performed by Dr. Ronald Zuker, from Toronto's Hospital for Sick Children) made local news. The local coverage spread ... and spread .... and SPREAD.

I'll never forget going to the hospital where Chelsey's first surgery was performed ... (December, 1995) - there were AT LEAST 10 news trucks in the parking lot! Downstairs, a room was set aside for the press corps. I think Chelsey's story was covered on every TV or radio station and in many newspapers - even around the world! Chelsey and her family had single-handedly done what no one else could do .... make people aware of the existence of Moebius syndrome.

In the months that followed, Chelsey's story was covered in Reader's Digest, People and Parents' magazines. Now, whenever I introduce Moebius syndrome to anyone, all I need to say is "Do you remember the story about the little girl who had 'smile surgery'?".....