Aly Aguilar | The Marfan Foundation

Aly Aguilar


music: Aly Aguilar

Hi! My name is Aly Aguilar. I am 17 years old and was diagnosed with Marfan syndrome just under two years ago after my mother (who has, quite frankly, been through hell and back with this disorder) was diagnosed. When I first found out that I had Marfan syndrome, I didn't know what it was or what it meant for my life. I was just scared. I felt alone. I felt punished. 1 out of every 5,000 and I was the lucky one? My mother was feeling enough guilt as it was, so of course I tried my best to hide these feelings from her, but I was just not ok with myself anymore.

I am very pleased to say that two years later, I have finally found myself and the things that keep me going! I've fallen in love with the power of music all over again.

It's good to know these long fingers are good for something! :-)

Since finding out about my disorder, I found another passion not common among teens and a bit unusual. I've made it my life goal to help teens (both with Marfan syndrome and without) understand that what makes you different not only makes you beautiful, but makes you useful. I hope to one day be a professional youth motivational speaker, spreading a message of love and self-acceptance all over the world. I've spoken at my church and hope to speak at my school later this year. Here is a video I submitted for a motivational speaking scholarship contest. Hopefully, it will show you a bit more about who I am and my passion.