2005

ALYSIA PADILLA-VACCARO

Advocate

BROAD STEM CELL CENTERS

Every parent’s nightmare is to hear their child is gravely ill. When our daughter Evangelina was just a few months old, she was diagnosed with severe combined immunodeficiency (SCID). More commonly known as the “bubble baby” disease, the rare genetic disorder left her at risk of death from any infection, even the common cold.

We considered a bone marrow transplant, but we couldn’t find a match—not even from Evie’s twin sister. Then the hospital informed us that there was one more space left in a clinical trial for an experimental gene therapy. A researcher at the Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research at UCLA was using patients’ own stem cells to repair the genes that caused SCID. It was Evie’s only option.

Being part of a clinical trial is nerve-racking. We didn’t know what to expect. But the moment we met Dr. Donald Kohn, he put us at ease. My husband and I always sensed that Dr. Kohn cared deeply about Evie and his many other patients.

The stem cell therapy was hard. It was horrible to see Evie go through bone marrow transplantation and chemotherapy, followed by an involved recovery process that required us to keep her environment sterile. Whenever we visited her, we had to wear gowns and masks. All that time, I could never show her and her twin sister off to friends and family. Worse yet, I could never kiss her little cheeks.

The trial was an emotional roller coaster, but we came out of it radiating like the sun. Our twin girls are now five years old. We have a normal, germ-tolerant home. We may get colds but everybody’s healthy. Evie is learning to surf, and every time I see her pop up on her board in the awesome Pacific Ocean I feel incredibly grateful. It wasn’t long ago that a child born with SCID had no chance of survival, much less of riding waves.

Scientists at the Broad stem cell centers at UCLA; the University of California, San Francisco (UCSF); and the University of Southern California (USC) provide the gift of hope for families like mine every day. In my case, they didn’t just give us hope; they saved my daughter’s life and, in the process, found a cure for a previously fatal disease. Our family is now committed to helping raise funds for stem cell research because so few resources exist. While our lives are wildly different from the Broads’, in our own way we now understand—and are driven by—the same overwhelming desire to give back what was so generously given to us.