Meet Cassie
Attending College in the Fall
Favorite Things:
+ Going to concerts
+ Musical theater
+ Reading
+ Crocheting/knitting
+ Hanging out with friends
+ My cats
Conqured:
+ 12 surgeries, including heart, spine, lung, and eyes
+ Getting to a healthy weight after being considered "failure to thrive" (my least favorite medical term)
+ Learning to drive!
Cassie's Mom's Wisdom:
"Definitely reach out to other parents who have been in your shoes. No two stories are the same but there are many overlaps and similarities and so many ways we can help each other, both with resources and support. The first time I talked to another mom of a child with Marfan, a huge weight was lifted because I finally felt like someone else really got what we were going through."
-- Cassie's Mom
Meet Cassie
I was diagnosed at birth with neonatal Marfan syndrome, which no one in my family had before me. My mom always says that my being diagnosed so early was a double-edged sword. It meant that I always got the best care, but it also meant my symptoms were severe enough that they could be picked up at birth.
For the first 6 years of my life, I had a lot of doctor's appointments with 12 or 13 different specialists for my heart, spine, ankles, lungs, eyes, GI system, nutrition, and so much more. I had MRIs and foot/leg braces and a back brace and so many things, but nothing got me down too much. Then I had 6 surgeries in a 3-year period which was really hard.
And since then I've had six more surgeries. Spinal surgery was definitely the hardest, and eye surgery was the most life-changing! I decided to go ahead with eye surgery when I realized that I wouldn't be able to drive with my vision at 20/70 (with glasses that were -22 prescription) and so we had my lenses removed. My vision changed completely to being farsighted with a +9 Rx. Completely different. But I can drive and also can recognize people from far away and see individual leaves on trees and I can see people’s eye colors without getting really close to them. It's been amazing. I'm also an ambulatory wheelchair user which a lot of people seem to find confusing. I can walk, but I need my chair for longer distances, like in school or the mall.
When I was younger I was pretty mad that I couldn't play sports but I found so many other things that I love to do, like performing in my school's musicals and art and reading and crocheting. I'm going to college next year and am excited (and nervous) about being more independent. Having Marfan syndrome isn't easy but my family and friends (and my cats) help me a lot. I started going to Marfan Foundation conferences when I was 5, and that has been such a great part of my life. It's incredible to have friends my age with Marfan or another connective tissue condition as well as some older friends that I can look up to. I also really like seeing the doctors there -- they are so caring and kind. My biggest advice to parents is to help your kids meet other kids with Marfan if you can! There's nothing quite like being able to talk to and joke around with my Marfan friends.
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Dated 12 February 2025
