In a powerful speech at the ALS Association of Wisconsin's annual Evening of Hope, Dan O'Donnell shared his family's struggle with Amyotrophic Lateral Sclerosis--more commonly known as ALS or Lou Gehrig's Disease.
Transcript:
Life is at its most basic a series of moments: The moment we’re born, the moment we graduate, get married, have a child, retire. There are moments we remember, moments we forget, moments we cherish, and moments for which we spend a lifetime planning.
And then there are moments that come out of nowhere and change our lives forever.
Mine came early in the summer of 2002. I had just finished my junior year of college and was preparing to take the Law School Admission Test. Even though school was out for the semester, I was busier than ever taking an LSAT prep course and working full time while getting ready to take a few summer classes.
I had been preparing for that test for weeks. That test was going to determine where I went to law school; at the time, I thought it was going to be the moment that determined the very trajectory of my life.
Today I can barely remember a thing about it. But I remember every second of the next night.
I went out to dinner with my family, ostensibly to celebrate being done with the test. But as soon as we sat down, I could tell something was off. Something was wrong.
“Dan,” my mom said haltingly. “We didn’t want to tell you this before the LSAT because we were worried it would distract you, but Aunt Margaret is very sick.”
Aunt Margaret wasn’t just my aunt: She was my godmother, my confirmation sponsor, and out of all of my aunts and uncles, all my cousins, I was by far the closest to her.
She was my first babysitter as a child, the first person I opened up to when my parents divorced as a teenager, and now, the first loved one I would lose far too early.
“Dan,” my mom continued. “Aunt Margaret has ALS.”
I didn’t realize it then, but that was the moment my life—my family’s lives—were changed forever, as are thousands of lives and thousands families each year.
5,000 people are diagnosed with ALS every year. At any one moment, 30,000 people have it. But those numbers may be misleadingly small. By some estimates, ALS is responsible for five out of every 100,000 deaths in people aged 20 or older, but in many cases the disease is never diagnosed because testing for it is impossible.
There is no part of the world that is unaffected by ALS; it is a disease that knows no racial, ethnic, or socioeconomic boundaries. It is most prevalent in people over 60 and generally strikes those between 40 and 70, but it can occur at a much younger age.
Just 20 percent of ALS patients live more than five years, while just 10 percent live more than 10 years. 50 percent die within three years of the onset of their first symptoms.
It is a living nightmare, and suddenly my family had to wake up to it.
Margaret Ann O’Donnell was born in 1947, the third child and first girl in a middle class Irish family of seven that grew up in Milwaukee. Her younger brother and sisters had trouble pronouncing “Margaret” when they were first learning to talk, so they called her “Sis,” a nickname that stuck into adulthood.
It was fitting, because Margaret was the consummate sis—always keeping a watchful eye over her younger siblings and even her troublemaking older brother; my father, Kevin, her Irish twin born less than a year before her.
After college, she became a teacher at Divine Savior Holy Angels High School. When my mom and dad had me, there was no question about who would be the baby’s godmother; it would be Aunt Margaret.
She never married or had children, but she treated her nieces and nephews as if we were her own.
Growing up, we lived near Aunt Margaret, and my brothers and I always wanted her to be our babysitter. Whether it was playing Go Fish, laughing hysterically while trying in vain to teach her how to play Super Mario Bros, Saturday night mass and then dinner at Fuddruckers’, or our annual trip to the movies on the day after Thanksgiving, she was always there for us.
When I was 15 years old, I worked a summer at my father’s subrogation firm, and he had hired Aunt Margaret to be his Director of Human Resources. This meant that she had to brief me on the company’s policies...including on sexual harassment in the workplace. Naturally, I giggled uncontrollably as she turned beat red and tried her hardest not to laugh while reading from the manual and then showing me a horribly outdated instructional video.
During lunch hours, she would help me practice for my driver’s test and we would talk about anything and everything.
A few years later, when I had to pick a confirmation sponsor, there was no question about who it would be. I remember my mom asking if I wanted a man to be my sponsor since all of my guy friends would have uncles or older brothers as their sponsors.
No, I told her, I knew I wanted mine to be Aunt Margaret.
As a confirmation gift, she gave me a silver Celtic cross necklace. I don’t even remember many of the birthday or Christmas gifts I got as a teenager, but I still wear that cross today.
In the spring of 2004, I was in my second semester of law school. I had known this day was coming since Christmas, but now I finally had to accept it.
I drove home from school, and my aunts and uncles flew in from across the country to gather at Aunt Margaret’s bedside. She didn’t want to be at a hospital; she wanted to be home.
It was quite possibly the longest weekend of my life, and when I had to head back to school on Sunday night, it appeared that I wouldn’t get a chance to say goodbye.
Her caretaker said she had slipped into a coma. Fighting back tears, I said one last time, “I love you, Aunt Margaret.”
Surprisingly, she opened her eyes and, through, her oxygen mask, answered, “I love you, too, Danny.”
Aunt Margaret died early the next morning.
Life is a series of moments. Some are almost unbearably difficult, but others can fill us with almost impossible hope; because sometimes life’s most difficult moments can teach us that there is always hope, which can sometimes come from the most unexpected places—like a viral social media challenge in which people across the globe poured buckets of ice water on their heads.
The staggering $115 million that was raised from the Ice Bucket Challenge funded research that led to the discovery of the gene NEK1, which contributes to the disease. And with a potential cause came hope for a cure.
In May, the FDA approved the first new ALS treatment drug in 22 years, Radicava, which has been shown to slow the progression of the disease by as much as 33 percent.
In October, an Israeli firm called Brainstorm Cell Therapeutics, announced that multiple clinical trials of a new stem cell therapy treatment called NeurOwn didn’t just slow down the progression of ALS—for the first time ever, the disease was actually reversed.
Life is a series of moments, and in this moment there is more hope than there ever has been.
And every moment, the ALS Association of Wisconsin is providing that hope for families all across this state; families just like mine.
You see, life is also about the connections we make in the moments that we have—connections with our families, with our friends, with anyone and everyone who may happen to cross our paths. Sometimes those connections are fleeting, sometimes they’re random, but sometimes they’re more meaningful than we could ever know.
In January of 2014, I did a radio interview with someone I had never met—Melanie Roach-Bekos, the Executive Director of an organization I had barely heard of. During that interview, I told her Aunt Margaret’s story, and she was so moved that she invited me to join a Leadership Team that the ALS Association was forming.
It wasn’t until months later that we realized that Aunt Margaret was Melanie’s favorite English teacher at DSHA.
In that seemingly random connection that Melanie and I made, there was meaning, and in the work that she and the entire ALS Association of Wisconsin do, there is hope.
A few months after Melanie and I met, my wife gave birth to our third child and first daughter. On the day she was born, I held her as my wife slept. As I looked down at her, I caught a reflection of light off of my silver Celtic cross necklace and smiled at my beautiful baby girl.
We named her Grace Margaret.
Holding her in the moments after she was born was a moment I’ll never forget. It was a moment of joy tinged with a hint of regret that her namesake wasn’t there to see her.
But that’s why we work to fight ALS, that’s why we are all here tonight: In the hope that one day, if not in my lifetime then in Gracie’s, the disease won’t rob any more families of any more moments together.
The speech was adapted from Dan's 2016 documentary special "There is Nothing Fair About ALS." To learn more about ALS or to find out how you can support the ALS Association of Wisconsin's mission, click here.