The Lapin Family
We are Eve Lapin and Bobby Lapin, and we would like to share our family’s story with you.
Our oldest son, Oliver, was diagnosed with Adrenoleukodystrophy (ALD) in December 2000. When Oliver was born, he was a happy and healthy baby and, as a toddler and young boy, he was sweet and smart and an absolute pleasure. However, when he was 7 years old, Oliver started forgetting things and repeating himself. By the end of first grade, he started having trouble staying focused and paying attention, and this once bright and wonderful little boy started to misbehave. We took Oliver to many doctors and specialists who continued to mis-diagnose and incorrectly medicate him as his symptoms continued to worsen. Finally, when Oliver was 8 1/2 years old, he underwent an MRI of his brain which revealed that he was suffering from ALD.
By the time we learned of Oliver’s true diagnosis, the disease had progressed too far for any medical treatment to help him. We cared for him at home and gave him love and comfort and dignity as he continued to lose abilities. Over the ensuing four years, he lost his ability to see, to walk, to talk, to move and, ultimately, he passed away at home the day before his 12th birthday. There is a big hole in our hearts, and we miss him every day.
When Oliver, as our oldest son, was diagnosed with ALD, we learned it was a genetic disease, and so we tested everyone in the family. We learned that our middle son, Elliott, had the defective ALD gene, while our youngest son, Alec, thankfully did not. Elliott underwent a stem cell transplant in May 2002 to halt the disease and is now doing well. Elliott, graduated from Stanford University in 2016 and is working as a reporter for the Houston Chronicle.