In 1996, I met the Noonan family, a close-knit Irish clan blessed with a wicked wit, but cursed with a wicked but rare disease -- early onset Alzheimer's .
At the time, not much was known about this mysterious disease which seemed to run in families and rob the memories of those as young as 40. After years of decline, those afflicted died young, often in their forties or fifties. Someone unlucky enough to carry the gene passed down from one of their parents, most likely would get the disease.
In the Noonan family of ten brothers and sisters, five would likely have the disease and five would be lucky enough to escape -- a hideous twist of fate. Those lucky enough to be spared would suffer as the others passed away.
I was overtaken by their story and I went in person to persuade them to tell it on "20/20." I drove to Cape Cod, arriving at night, by myself, in a terrible foggy storm. When I met the brothers and sisters, they had already witnessed the untimely death of their young mother and her twin sister, and faced a cruel equation -- half of them would get this disease yet no one knew who. What would it mean for their children and grandchildren? They were in the midst of such turmoil and were reluctant to go public -- dredging up a painful past and coming to grips with an uncertain future.
In the age of Facebook and Twitter, it is almost quaint to recall the Noonans' reticence. But there were all kinds of implications and ramifications for them at the time, all of which I completely understood. Even as I made my case, I counseled them to do what was best for them. So after a long grilling, they asked me to leave the room, and took a family vote. I would be lying if I said I wasn't trying to listen in to their debate and yet grateful that I could not make it out through the closed door. Finally, Julie, the family spokesperson, summoned me back in and gave me the thumbs up.
The Noonans personify courage -- they opened their hearts, their lives, and let me and all of our viewers in. They have done the same for scientists and researchers studying the unusual disease. Their interviews were articulate, emotional poetry spoken from the depths of their Irish souls, about the beauty and cruelty of lives they loved. At times, my camera crew and I could barely contain our tears. The Noonans generously offered first-hand knowledge and insight about the disease, and wisdom about how to live a memorable life in spite of it. I will always be grateful to them for sharing their heroic saga.
Since airing their story, there is more we know about Alzheimer's and early-onset Alzheimer's, but not nearly enough. There is still no cure or way to slow the disease. And for the Noonans, the disease has taken its terrible, inevitable toll. They have lost three -- Maureen, Fran, and on November 4th, Malcolm. These many years later, as I have come to know them even better, I deeply admire how they are able to transcend the pain of the past so they can extract joy from the present while holding out hope for the future. What a powerful legacy.