Behind every case of ALD is a story the story of a little boy or a young man whose life was shattered, and often taken away too soon. The best-known person with ALD is Lorenzo Odone, whose struggle with the disease and his parents extraordinary efforts to find a treatment were chronicled in the movie Lorenzo's Oil.
Oliver Abraham Lapin had much in common with Lorenzo Odone. Born in 1992 in Houston, Texas, Oliver was sweet, caring, highly intelligent, and much beloved by his family. Like Lorenzo, and like thousands of other boys diagnosed with ALD, he seemed perfectly healthy and normal as a baby and toddler, and was growing up to be a happy, energetic and delightful little boy until he was stricken by ALD. And like Lorenzo and so many other boys with ALD, he was misdiagnosed for years. By the time an accurate diagnosis was made, he was already severely affected, with no treatment available to help him.
Although the correct diagnosis came too late to save Oliver, it did provide early warning for the other two affected boys in the family, for whom treatment could still stave off the effects of the disease. Wanting to help other boys like Oliver, and save other families from helplessly watching their sons deteriorate and die, Oliver's extended family launched the Stop ALD Foundation in early 2001.
On Thursday, August 12, 2004, the day before his 12th birthday, Oliver passed away from complications related to ALD. He was at home, lovingly surrounded by his family.
Too many families have lost children, and too many boys and men have lost years of healthy lives to this terrible disease. In honor of Oliver, Lorenzo, and so many others, the Stop ALD Foundation strives for new knowledge, treatments, and ultimately a cure.