Programs about Moebius and other rare conditions are so, so important because that is the way many people without direct involvement with someone who happens to have a condition (which, after all, is very rare) get some exposure. Although it doesn’t completely help with awareness and understanding, it does create a common knowledge base to increase awareness.
The BBC2 and Landmark Films produced a series called Children’s Craniofacial Surgery, profiling the work of the Oxford Craniofacial Unit and focusing on many different conditions including Moebius syndrome and Apert syndrome — as well as many more even rarer conditions.
Wonderful to see how these doctors and families are presented. After watching the entire series, I have so much respect for that entire team and especially the doctors who engage in this specialty.
One thing that one of the physicians said that really resonated for me when I watched it, when speaking about a pre-teen boy with Pfeiffer’s syndrome, was that while he is a wonderful and unique child — his personality and sense of self were shaped by his difficult early life. Is that a good thing? Probably not, but it is what it is and not something you can change or wonder too much about…
Children’s Craniofacial Surgery: http://www.bbc.co.uk/programmes/b01129cw