“A Beautiful Response to ALS”: A Sister’s Tribute to Her Brother’s Courageous Battle
It started with a spilled glass of red wine.
During a picturesque family spring break in California’s Julia Pfeiffer National Park, 44-year-old Charles was toasting the sunset when he dribbled wine down his crisply pressed blue shirt. His family—including his sister, author Larkin McPhee—laughed it off as a clumsy, funny moment.
Tragically, none of them knew that this minor slip was the silent alarm of a massive neurological breakdown. Within months of that dinner in 2006, Charles would be diagnosed with Amyotrophic Lateral Sclerosis (ALS), launching a devastating, yet profoundly inspiring, battle for his life.
Best friends even as children – Larkin with baby brother Charles
Actor Eric Dane brought ALS back into the headlines when he died of the disease earlier this year
A Medical Irony and a “Miraculous” Announcement
Four years into his illness, Charles had already survived far beyond the average life expectancy for a patient with Bulbar ALS. His care had become an around-the-clock job, meticulously managed by his devoted wife, Petra, who tended to his every need alongside their young daughter, Celia.
Then, one winter day in 2010, McPhee received an email from her brother. Using an infrared device mounted to his forehead to tap out letters on a keyboard, Charles shared unimaginable news:
“Petra is eleven weeks pregnant and all indications are that this is a healthy babe… please do share with us in our excitement and hopes to bring another member of our collective family into this beautiful, impossibly beautiful, wondrous world. I know you all are now thinking what a total stud I am, given the circumstances, and what a hot, fertile babe Petra is, and what can I say, facts don’t lie.”
The announcement sent shockwaves through the family. One of the great medical ironies of ALS is that while it destroys voluntary muscles, it is still possible for patients to engage in intimacy due to the preservation of involuntary muscles. But the decision to actively seek a pregnancy while battling a terminal illness surprised everyone.
A Reason to Keep Living
The wisdom behind Charles and Petra’s decision soon became powerfully clear. Charles was looking ahead to a future where he would no longer be physically present. He knew that Petra had devoted her entire existence to keeping him alive. What would she do when he was gone?
Baby Ella was the answer. Not only would she ensure that Celia did not grow up alone, but she would also give Petra a vital reason to keep moving forward after the devastating loss of her husband. Ultimately, Ella also gave Charles a profound reason to hold on just a little bit longer.
Upon gazing at his newborn daughter, Charles used his infrared tracker to tap out a final, defining sentiment: “What a beautiful response to ALS.”
Charles passed away when Ella was nearly eight months old and Celia was six. Though his physical battle ended, his radiant spirit—and the family he fought so hard to build—lives on.
To read more about Charles’s journey and the profound bond of family, Larkin McPhee’s book, I’ll See You In My Dreams: A Sister’s Memoir, is published by Koehler Books on June 10. May is National ALS Awareness Month.
