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Apr. 26, 2015

TOPIC: Uncategorized

Get to Know Portraits of Courage Honoree, Devin Alvarez

Posted by Jennifer Huron

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. 

“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.

2 Responses to “Get to Know Portraits of Courage Honoree, Devin Alvarez”

  1. Kimberly Hawks says:

    Hi- Thank you for starting an association for Sprengel. Would you send me a link to the website? I’d be happy to share our story/learnings and join your organization. We live in the USA. Our daughter is 7 years old and was diagnosed with moderate Sprengel Deformity with an omovetebral bone and Scoliosis when she was 6 years old. She had surgery (modified Green-Woodward method) this April at Stanford Childrens in California to remove the omovetebral bone and reposition and lower her scapula in an effort to reverse the Scoliosis. She recovered quickly from surgery, and she is able to do anything she wants, but with extreme compensations that are unhealthy for her spine and worsens the deformity. Her scapula immediately moved up following surgery and she needs physical therapy daily in order to reverse her compensations and use her musculature to lower her scapula. Her surgeons have suggested another surgery, but we want to do anything possible and use surgery as a last resort. We are monitoring the Scoliosis with low radiation x-rays every 6 months, and if it worsens may need to consider a body cast or rod. I’m interested in hearing more about your daughter, and others with Sprengel since there is so little information on this rare anomaly.

  2. Couldrey Florence says:

    I’m living in Brussels (Belgium). Our daughter has Sprengel, fused ribs, bad vertebrae and scoliosis. She is 2 year old. She does 3 times a weeks physiotherapy. Before the end of the year we will built an association for patient having Sprengel… as at the moment there is no association in the world. I would like to get in touch with other patient having Sprengel. Many thanks. Florence