Andy is 27 years old now. He still lives at home with us, his mom and dad, two cats, and a dog. He can understand most of what people say, but is usually too anxious to let you know. He will cover his face whenever someone walks into the room - even his mom or dad!
Andy attends a supported farm program most days, and the minute he is out of the house, we rush off to work at FRAXA. We don't know what the future holds, but we hope for great things for Andy. We try to teach him basic skills to increase his independence in the future, but realistically, we don't leave him alone for even 15 minutes at this point. What do you call a babysitter when you need care for a 27-year-old?
There is an image of Andy I can never forget, at 3 years old, screaming, flapping his hands, stomping his feet, seemingly trying to jump out of his skin. He couldn't tolerate the way he felt. Many children with Fragile X feel this way. This is just one reason why research to treat or cure Fragile X is key.
Andy was diagnosed with Fragile X syndrome at age 3. We, his parents, have been working to improve Andy's future ever since; we officially launched FRAXA when he was five. At times, Andy is a delight, but he has always struggled with extreme anxiety and mood swings.
Andy has begun the open-label phase of a clinical trial of AFQ056 from Novartis! It's been 3 weeks now, titrating up to the full dose, and in 3 more days we will be there. We are already seeing wonderful things ... Andy is opening up, allowing us to have friends over to the house without panicking, and responding more often when we talk to him.
August 15, 2014:
Andy has been off AFQ056 for 10 days now, and life is much harder than it had been over the past year.
Learn more, on NPR Morning Edition, reported by Jon Hamilton:
Donations made in Andy's honor will go directly to one of the research teams FRAXA is supporting. Thank you for considering Andy!
- Katie Clapp and Mike Tranfaglia