It may not yet be too late for people living with ALS

The text I wrote describes my feelings about the disease that sadly took my brother on July 11, 2012, at the age of 43. I’d like to take this opportunity to praise my mother and everyone else whose incredible support allowed Maurice to stay at home until just two days before he passed away in hospital. Thank you from the bottom of my heart!

My text is called “In the Blink of an Eye.”

When my brother, Maurice, first told me he had ALS, I was shocked, and even more so when I realized everything he’d have to go through in the very near future: total loss of his autonomy, failure of his entire body, and finally, being able to communicate only by blinking his eyes.

No one wants to believe something like that. How can it be possible? What causes this God-forsaken disease? It was like my brother had been cursed by the devil.

Then, we put on a brave face, braced ourselves, and started living day by day. I’ll stand by you until the very end, my brother, because I love you. Maybe they’ll find a cure before it’s too late—the battle’s not lost yet.

Then, we went into “panic” mode. What can I do for you? How can I help you? What can I do to make your life more bearable?

You, who were so independent, so proud of your appearance, so strong. Everything is fading away, a little more each day, always something else to mourn at each stage in the disease. I think that having ALS is an exercise in absolute humility. Privacy goes out the window, and you need someone to help you with every single thing that you do.

And, then, one day, he could talk to me only with his eyes. He couldn’t move at all, couldn’t even speak, but his eyes were alive, communicating with me.

At the same time, my hope for a cure was ebbing away…

The disease rages on, research crawls along, and my brother is slipping away… Hurry! We need to fight ALS!

What brings me here today is hope—the same hope that dwelled in my brother Maurice until the very end.

It may not yet be too late for people living with ALS. Thanks to your generosity, together we can fight the disease and support the families who are touched by ALS.

Thank you all for being there, and thank you for your generosity.