Devin alvarez rare disease community member

Get to Know Portraits of Courage Honoree, Devin Alvarez

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Devin Alvarez is a remarkable 18-year-old who has undergone 44 surgeries related to Sprengel Deformity, a rare disease in which the shoulder blade is displaced upward, causing skeletal and muscular deformities and medical complications. Devin alvarez 1

“My back is full of scars because of all my surgeries.  When I look at myself in the mirror, I don’t grieve.  The scars are motivation for me to continue on and strive for greatness.”

Devin recalls waking up during one surgery.  His lungs had filled with fluid.  Most people would have been terrified to hear what Devin overheard from doctors that day.  Instead, Devin was able to gather strength and get through the procedure, likening the experience to “just like anything else you have to go through.  For instance, I am in high school now and I compare these things to a homework assignment.  I keep on striving, no matter what happens to me.”

Devin attributes his strength and courage to his mother, Rixys, and music.  He aspires to one day be the face of hope for people who are going through difficult times, and to reach people through his music and poetry using his stage name, Titan, a tribute to the two titanium rods in his chest.

“I want to make music that inspires others to never lose hope, to never stop seeing the light, and to keep going.  Trust me, I did not know if I was going to live or going to die; I did not see myself reaching the age of 13, and then I did not see myself graduating high school, and I’m doing it.  My story is for everyone.”

NORD is honored to tell Devin’s story as part of the 2015 Portraits of Courage celebration.