Elvis| November 3, 2009 - August 5, 2022 | Columbus, Ohio

”I just want people to cure this disease. Many children suffer because of it. We are living, trying to stay positive, but It has been difficult since Elvis' death.” —Miguel

Sacrifice is inevitable within the communities in which we work. Every parent or caregiver we’ve met takes extraordinary measures to combat the multifaceted challenges in their loved ones' lives. It is a thankless task and most get little recognition for their care and labor. Furthermore, it cannot promise the desired outcome.
When we visited Elvis in 2019, he spent most of his days in bed on oxygen in the family’s living room. His well being was the central point of daily life. Miguel and Nicolasa watched over him day and night, comforting their son when he got upset or had seizures, as well as sharing in his small joys, like watching Thomas the Tank Engine, having songs sung into his ear, and taking walks outside.
His parents missed Mexico and wanted nothing more than to reunite with family there. However, this dream proved unfeasible as Batten disease and immigration policy forced them to stay put. With Elvis’ passing in August of 2022, the magnitude of the loss became even more apparent. “We still have family in Mexico that Elvis never got a chance to meet,” says Miguel. “I want to take my daughter, but how can she go? She cannot see.”
Fatima, Elvis’ younger sister, also lives with Batten and has lost her vision despite receiving enzyme replacement therapy as part of a clinical trial—which Elvis never had. Miguel and Nicolasa now face the specter of her decline as well. Their story serves as an important reminder of the urgency of developing new medicines for rare diseases and of the limitless compassion that human beings possess for one another. Through stories, pictures, and videos we hope that Elvis’ presence will live on in the hearts of many.