Meet Ellie
Willpower and Strength
Favorite Things:
+ Best dog mom
+ Being with family
+ Laughing with friends
Conquered:
+ 57 surgeries including:
+ Eye surgery
+ Heart surgery
+ Spine surgery
+ Leg surgery
Ellie's Wisdom:
+ “Strength shows how much you’ve been through, and survived throughout your life.” – Ellie
+ "Marfan’s Syndrome was the beginning of my story, but it’ll never be The End. It’s who I am right now that will be." - Ellie
+ "I never had a role model in being chronically ill, so I kind of learned on my own that I’m not a problem for being different. I remind myself every day that some people don’t have role models for their differences. I try to be one anytime I can." -Ellie
Meet Ellie
Wise beyond her years.
Hi! My name is Ellison Spencer, but since you’re not a doctor, my legal name doesn’t really matter. I’m Ellie, for short. I was one of the first few successful cases of neonatal Marfan Syndrome.
I was diagnosed at three months old, but my parents noticed signs of “something” when I was a week old. They originally thought that I was blind. It was actually the lenses in my eyes shaking from being partially dislocated. By three months, I had eye surgery on both eyes under my belt. By nine months, I’d had my first open heart surgery. By two years old, I’d had three open-heart surgeries and a few others.
I’m nineteen now! I’m a big girl! I’ve got a (sorta) job working as co-owner of a flower shop with my mom. I’ve become a pseudo-mother of a beautiful Newfoundland-Poodle mix named Mavis. She’s the love of my life. I’ve graduated high school, and (a little late) I’ll start college this Spring—2025! I’ll be slowly moving in the direction of an Associate’s Degree. I took my sweet time, and I’m happy about it. I’ve been busy for the last three years with some sudden—and random—medical issues, but my life has honestly never been better than it is now. I have anxiety and depression, I’ll be honest. Life isn’t all picnics and roses. I see a psychologist once a week, a psychiatrist once a month, and I’m on medicine to help with every day life, but I’m blessed. Life will never be perfect, but it’s pretty darn good right now.
I used to seriously think that Marfan’s Syndrome ended my life. That the disease was all I was, and that I’d ever be. I still think that about myself sometimes. But, I’ve learned that I wouldn’t be who I am without that piece of my life. I wouldn’t be as compassionate or as empathetic towards others with differences—disability or not. I wouldn’t have the humor and ability to laugh that I have now. I wouldn’t be as strong or as easy-going. I wouldn’t have been me, and there’s no one on Earth that’s better than being me than I am. The days are hard, but the minutes and hours are the best in the world.
Marfan’s Syndrome was the beginning of my story, but it’ll never be The End. It’s who I am right now that will be.
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You can read (and watch) more of Ellie's inspiring story here.
Dated: 26 February 2025
