A Moebius Syndrome story

My first grandchild was born with Moebius Syndrome. He is 9 months old. He has had one eye surgery (so far) and has clubfoot and will be having foot surgery on August 17. I would like to get to know other family members who have children or grandchildren with this disorder. I have done extensive research and I have a deep understanding of it. I may be in a position of raising my grandson so I just want to connect with others living with this condition.