Hi and welcome. Hopefully there will be folks here who can help you. My late sister-in-law had myatonic dystrophy, as well as at least one of her sisters. My niece has it, as does her 19-year-old daughter.

If you don't find the information/support you need here (which you probably will!) I will contact my niece and see if she might be interested in getting in touch with you. She is a helpful and generous soul, so it would surprise me if she were not so inclined.

Wishing the best for you during a difficult time.