A transplant was not possible for her son, either, because they could not find a matched donor. Still, her son has a relatively mild form of the disease and has not succumbed to the infections that can be ever-present. He is currently going to school and is able to live a relatively normal life. "He is a beautiful and well-adjusted child, so I am blessed."
Others are not so lucky.
On YouTube there is a video posted by a young man who calls himself Jeff. It runs just over a minute and begins with a simple plea: "I am making this video today to request help..." Jeff explains that three years ago at age 21 he was diagnosed with Wiskott-Aldrich. He says he can't find a doctor to treat him and knows very little about the disease.
The video continues: "I am reaching out to anyone watching this video. If you are a doctor or know of a doctor who is willing to spend the time and energy to devote with all my problems and symptoms I have, I would greatly appreciate it."
The video was posted more than a year ago.