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.

Jose Luis' ALGS Story


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