Every Day Adds Up

This August, we’re sharing stories of the individual actions that add up to make a difference in the lives of people living with ALS. Today's story comes from Nell Hardy, pictured above at the 2016 Walk to Defeat ALS in Manhattan with her three sons, Brendan (left), Connor (middle), and Emmet (right). Her fourth "son," Rico, is perched on her lap, which is his favorite spot to spend every day. Nell and her family are also featured in our Every Drop Adds Up video, crossing the finish line together.

Every day adds up!
I've been partnered with ALS for eight years.
It is not a gentle companion.
The disease is progressive and exacting.
I haven't eaten food or talked for five years.
I can't laugh, sing, or scratch an itch.
But I think I am winning.
Somewhere between my first bout with pneumonia and the blood transfusion for low iron, I put down my weapons.
The disease was too cunning and huge for me to take on!
Instead, I practiced acceptance and hope.
As the disease whittles away at my 5' frame, I gather my friends and family around me.
We believe, we are patient: there is a cure.
Life is too good to give up.

We want to hear from you, too! How would you fill in the blank? “Every ___________ adds up.” Tell us about your ALS journey and your commitment to advance the fight against ALS. Tag your answer on social media with #EveryDropAddsUp or send us a blog post!

Comments

Submitted by: Charlie K. on Wed, 06/28/2023

I wake up everyday and try be positive but even going to the bathroom tires me out And reality set in. Then trouble eating is my next chore. As the day goes on it gets. Worse
I serve no purpose other than to become a burden to others

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