We are thrilled to share our newest patient spotlight story, featuring Andy! Andy was born in Mexico City with Ectodermal Dysplasia and Primary Immunodeficiency. He was brought to Boston Children's Hospital where he underwent a life-saving bone marrow transplant in which his sister, Sofia, was the donor and ultimately saved his life. Andy celebrated his 20th bone marrow transplant anniversary on October 29, 2024. Andy and his family are featured in our Do Something: The Jeffrey Modell Story.
Please share a few sentences about your overall experience living with PI.
I was born in Mexico City with Ectodermal Dysplasia and a Primary Immunodeficiency. I needed several hospitalizations as a baby; therefore, I was brought to Boston Children's Hospital to have a lifesaving bone marrow transplant for which my sister was the donor and saved my life. Living with PI or a type of PI isn’t easy sometimes, especially when it's hot outside because I do not sweat at all. I needed a lot of dental work done to attempt to fix my teeth which were all jagged. I now wear veneers every day.
How and when were you diagnosed? Which specific PI disease do you have?
Nuclear factor-kappa B essential modulator (NEMO).
How has treatment impacted your life? How did you decide this was the correct treatment for you?
I was in the hospital basically half of my life as a baby and little kid, and Boston Children's became a second home to me. My parents decided that a bone marrow transplant was the correct treatment and thanks to them I'm still alive today.
Do you share your story with others online? If so, tell us what made you decide to do so.
My story is shared in a book my dad wrote about me and my sister and the experiences that my parents went through while caring for me. I also have a website explaining my story and I'm in the Jeffrey Modell Foundation’s Do Something documentary.
If there's anything else you'd like to share with us, please do so below.
October 29, 2024 was the 20th anniversary of my transplant.