Mickey's Story

Mickey was born in New Jersey on May 2, 1975, to her devoted parents, Domenico and Angelina Pugliese. Just nine months later, their sweet, blonde-haired, blue-eyed baby began suffering from persistent high fevers and severe nausea. Night after night, Mickey struggled, and her parents urgently sought answers.

For more than two years, Mickey was misdiagnosed and treated for a variety of illnesses. Eventually, a determined physician expanded the search nationwide, looking for similar cases. That search led the Pugliese family to a research institute in California treating a small number of children with comparable symptoms. In 1978, Mickey was diagnosed with Fanconi syndrome and shortly thereafter, cystinosis.

As the disease progressed, Mickey’s kidneys began to fail, and her health challenges intensified. Over time, she also lost her vision. Mickey spent more than 12 years on dialysis and became blind during that period. She participated in early clinical trials for cysteamine—now known as Cystagon—as well as experimental eye drops designed to prevent the buildup of cystine crystals in the eyes.

Her treatment regimen was relentless, often requiring nearly a dozen medications each morning and night.

Due to extensive kidney damage, Mickey was placed at the top of the transplant list. After two unsuccessful kidney transplants, her family remained hopeful. On January 5, 1994, Mickey received a third kidney transplant—this time, a success.

Mickey learned to live with cystinosis, but she never stopped hoping for a cure. In September 2009, she was diagnosed with cancer. With the same determination that defined her life, Mickey fought bravely through months of chemotherapy.

Mickey passed away on April 18, 2010. Her spirit, resilience, and zest for life touched everyone who knew her. She was deeply loved and never alone.

Mickey’s greatest hope was for a cure for cystinosis. Mickey’s Angels was created to carry that hope forward. Proceeds from Mickey’s Angels pins directly support cystinosis research, helping advance treatments and move us closer to a cure.