Success Stories

ADRENOLEUKODYSTROPHY

Jose’s Story

Ramón and Maritza Casso loved their first born son, Juan, with all their hearts. Like many parents they wanted far more for him than they wanted for themselves. And when their second son, José, arrived seven years later, they felt the same way. Juan and José, the sons of immigrants from the Dominican Republic, lived with their parents in a third floor apartment north of the nation’s capital, where all seemed right.

Then Juan began to experience vision loss. Concerned, his parents took him for an eye exam, which he passed. After that, they visited a neurologist who eventually diagnosed Juan with a genetic syndrome called adrenoleukodystrophy (ALD), a devastating and often fatal disease that can result in vision and hearing loss, learning disabilities, seizures, and dementia.

Staggered and in search of hope, the Casso’s were directed to Kennedy Krieger, where a study was taking place on ALD. There the Institute’s doctors suggested that one-year-old José get tested for the same genetic liability as his older brother. Results were positive, doubling Maritza and Ramón’s fears. Sadly, they learned, it was too late for Juan, who was symptomatic and showing obvious signs of ALD. Fortunately José wasn’t showing signs of the disease. He was immediately placed in a study where he took daily doses of a solution called Lorenzo’s Oil that he takes to this day. At the time, Dr. Moser theorized that it would keep presymptomatic children from ever developing the disease. The results have shown this to be true and, thankfully, José has never developed any symptoms.

Bedridden for ten years, Juan passed away in 2005. Of his deceased son, Ramón says, “He was very loveable with sweet smiles and eyes. He loved school and never complained about what was happening. He was the one who named José.” For his part, José continues to write Juan’s name on any form that requests a list of family members. He’s thirteen now, handsome, intelligent, and into sports, especially baseball. Like most teenagers, he’s ill equipped to express his emotions with eloquence. But his eyes are intensely sad when he speaks of his brother. “We used to share a room together. When he coughed, I’d go check on him. If he needed to be moved, I’d move him…we were very close.”

Anymore, José doesn’t seem to fear developing ALD. Of his future, he says, “I want to be a famous baseball player and a businessman.” He’s making plans for the future, something we’re sure Juan would be happy to know.

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