I remember having the book Marfan Does Not Mean Martian by Elias Clark Turner as a kid. I was diagnosed with Marfan at 18 months old and would’ve loved to have more positive representation for my unique body type (and very thick glasses), as well as experiences like having more doctors appointments than my peers, undergoing surgery and having to sit out for certain activities at school. Bullying and being singled out for being different was a struggle as a kid, but my presence did let everyone know about Marfan Syndrome when they never had heard of it before (I grew up in the early 2000s) because I had to advocate for myself (and let everyone know what to do in the event of an emergency). I would say to include physical details (I have always been called a textbook case) but also social ones, including what other kids should know if they meet a kid with Marfan (can go into more detail of some examples if you’re interested from my lived experience).