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Meet Jose Luis!

Hi, I’m José Luis. I was born on March 13, I’m 29 years old, and I’m a Warrior! I was born yellow and then diagnosed with Alagille syndrome. Growing up everything seemed normal until I had two strokes as a little kid. The first one, the strongest one, was at age 3. It left me with a right hand disability. The second one, at age 5, was less intense. Along with strokes, I’ve had a brain leakage. This affected my learning abilities. I have a heart defect called Ventricular Septal Defect (VSD), pulmonary stenosis, and a biliary problem.

We live in El Paso, TX. When I was younger my parents had to travel back and fourth to the children’s hospital in Denver, Colorado. They were told I wasn’t going to live long and so my parents moved us to the Ronald McDonald house for a temporary time to get through.

In fourth grade, I was placed in special education classes. It was because of this special program that I was able to get through school. I don’t have many friends and believe I’m the only one with Alagille syndrome in El Paso. I’m a volunteer at an elementary school and I used to be in the police explorers program. I like to listen to music, ride my bicycle, and I’m an Uber driver. I would really like to meet other people with Alagille syndrome.

I’m José Luis and this is my story.

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“Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.”

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2018-07-10T18:49:55+00:00