Back in 1984, my parents wrote a lovely little children’s book on living with Marfan syndrome called _How John Was Unique_. I’ve encountered several Marfs over the years who said this book has meant a lot to them. One lady on FB who’s a few years younger than I am said that she’s literally given out hundreds of copies to people.
A few years ago, I noticed it was out of print and no longer available from the NMF catalogue. I asked them about digitizing it, and never heard back. I just did a Google search, and found it is now available from the NMF in PDF format:
The Lewis Crusade 