Connective Issues Fall 2022

IT’S OK TO BE A GIRAFFE

If your child is the first in your family to have Marfan, Loeys-Dietz, or VEDS, you can’t help wondering what is going on in their mind as they deal with medical issues and more doctors than any child should have. In a new book, Dude, I’m Just a Giraffe , Christopher Stuart pulls the curtain back on what went on in his mind as a child and teen dealing with Marfan as well as being on the autism spectrum. Chris recently

kids with Marfan at the conference. Three of these answers were used in the film, including mine. They were specifically selected to show a spectrum of reactions. One was negative, bemoaning being trapped amongst fellow freaks. One was neutral. The other was blindingly, frankly saccharine-sweet levels of positive. I was the neutral opinion, and the title of the book is a paraphrased version of my interview answer. u What do you hope others to be a giraffe. Your life doesn’t need to suck, and you don’t need to be some symbol of perseverance for the Marfan community. You’re allowed to just BE. u Did you learn anything about yourself while going through the process of writing the book? I’ve always been a pretty self-aware boy, so I didn’t learn all that much new about myself. Rather, the way everyone around me saw me - how often I was the glue holding various social groups together without even realizing it? That really surprised me! will learn when they read your book? Just that they’re not alone in this, and they can have a normal life. That it’s okay

Karen Murray, a member of the Board of Directors, wrote the Introduction for Chris’ book. She was also a longtime friend of Chris’ mother, Ann Reinking, a legendary Broadway dancer, choreographer, actress, and singer. Here is an excerpt from the introduction. I’m just blown away by this book. I’m not sure anyone will truly believe all that Chris has been through and endured throughout his lifetime. That’s the truth about Marfan. You just never know what is going to hit you and, it sounds cliché to say this, but “rolling with the punches” is all you can do, and no one is doing it better than Chris! He has endured more than most and also has his emotional challenges to deal with...being on the spectrum with autism. But through it all, he studied, graduated, built his relationships and his friendships, both young and old, and knew how to surround himself with people who only made him better! And he did it on his own, and he did it his way. Congratulations! Such a good read. Dude, I'm Just a Giraffe is available through several e-book distributors including Kindle and Barnes & Noble.

attended the E 3 Conference where he was recognized with the Foundation’s Heart of the Matter award. He also signed copies

of his book which were given to each attendee. We sat down with Chris to learn more about his book. u What can you say about the title of the book? I go into detail in the book itself! But to give a quick breakdown, do you recall the movie that the Foundation made, In My Hands ? Well, the filmmakers did a brief interview with every Marfan kid involved in that film. We were all at the Marfan conference at the time, and so most of the interview was centered around our experiences while there. One question was how we felt being around all these other

A giraffe is just a giraffe. Nothing more, nothing less. He does not envy the animals around him for being "normal," nor does he see himself as above them all (even, from a certain point of view, he quite literally is) because he's a giraffe. He does not see himself as some sort of freakish mutant horse, but neither does he see himself as some sort of Super Horse. ~Excerpt from Dude, I'm Just a Giraffe

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Fall 2022