Losing a Father to ALS and Raising Money for a Cure: One Daughter’s Story

The author dances with her father at her wedding.

On March 6, 2016, a bomb went off in my life. Its name was ALS. I had vaguely heard of ALS by way of YouTube “Ice Bucket Challenge” videoes. But that day, the most important person in my life, my Dad, Dr. John J. Hutton, was given, as he termed in, “a death sentence.” He had galloping ALS. By the morning of June 19, 2016 – Father’s Day – he was gone.

My Dad was, and still is, my hero. He was a physician, academic, father, mentor, friend, advocate, and the most caring and giving person I have ever known. He was Dean of the University of Cincinnati College of Medicine for many, many years. He left in 2001 and began working at Cincinnati Children’s Hospital, from where he retired in 2015, when he started getting sick.

To me, he was invincible. That’s why the gravity of his diagnosis did not truly hit me until I was sitting at his bedside holding his hand after he fell into a coma. Watching him struggle to breathe, I finally understood that he was going to die. I rejected that reality until the very end. I did not accept what ALS was or that it had no cure or treatment until his eyes closed and he slipped away a week later. I still struggle with the realization that he has passed. By sharing his story, I hope to help others who are stricken with ALS or who care for someone who is and perhaps gain some peace for myself.

My Dad started visibly suffering from a mystery illness in 2015, although he likely had symptoms much earlier. The first thing I noticed was that he began struggling to speak. He was diagnosed with everything from severe allergies to a mystery throat virus. We assumed it was something simple and that, with the correct medication or treatment, he would recover

Then he started struggling to walk. He would unsteadily hunch over and would gasp for air after a few steps. But he’d miraculously survived multiple pulmonary emboli the year before so we assumed that he was still recovering.

Dr. John J. Hutton

At the end of 2015, he started having chronic nausea and stomach pain. He could not eat. He lived on frozen sorbet and yogurt. On a good day, he would proudly announce that he had eaten a whole banana. I remember going to a restaurant with him and watching him struggle to swallow soup. We were terrified that it was stomach cancer. He took industrial strength antacid and anti-nausea medication while we waited for a diagnosis. Not cancer, please don’t let it be cancer. I was sitting with my parents in their living room when he received his test results. He smiled and quietly announced that his scans were clear. We were overjoyed. In our minds, as long as it wasn’t cancer, things would be ok. But the mystery illness progressed.

My Dad continued to rapidly lose weight. He was 6’1″ and 200 lbs when he started declining. By the time he passed away, he was 134 lbs.

By February 2016, he was having laryngeal spasms that temporarily cut off his airway. But he told us that, if he had one, we should not call 911. We should just be patient because it would pass.

Then, on March 6, 2016, he went into respiratory distress and collapsed at his apartment. He was admitted to the intensive care unit at University Hospital. For the first time, I felt truly terrified – he was wearing a bright orange “DNR” bracelet.

Later that day, his neurologist, Dr. Quinlan, made the gut-wrenching diagnosis. My Dad was not suffering from Parkinsons, an ulcer or some exotic throat virus. He had advanced ALS. But the revelation meant little to me because I did not know what ALS was. In my mind, it was going to be ok because it was not cancer. Looking back, I almost wish it had been.

After he was released from the hospital, he needed his first walker, which we cheerfully outfitted with tennis balls. We got

LH hands 1
Liz embracing her father

him the Cadillac of lift chairs because he could no longer get up. We brought in a hospital bed. He was provided with what would become his nemesis – a CPAP. But it never fit properly and was so awkward and uncomfortable that he refused to wear it at all.

In April, I bought him an industrial strength blender to puree his favorite foods, which included liquefied waffles. He had a stomach tube to supplement what little food he was able to force down. The kitchen counters were stacked with medications. The apartment became a revolving door of nutritionists and physical and speech therapists. But it was like throwing a rock at a freight train.

By May, he was mute. He could vocalize but could not pronounce words. We installed text-to-speech apps on his phone, but he refused to use them. When we could not understand him, he would just give up and shut his eyes. At first, he could write short notes, but his motor skills deteriorated, rendering his notes illegible. He could text on his phone and occasionally send emails, but his messages eventually stopped. And nothing could stop his weight loss. By May, he had lost 50 lbs. His pants hung off of his bones, only kept up by a pair of black suspenders. Most days, he would just sit in his lift chair with his eyes closed. He stopped leaving the apartment entirely.

At this point, our family had to confront a decision that no family should have to face. My Dad’s respiratory health was failing. He refused to use his CPAP. The only thing that could keep him alive was a ventilator. While the decision was always my Dad’s, we debated the issue amongst ourselves. It would extend his life, but of what quality? He would have to be institutionalized. He would be tied to a machine for the rest of his life. He would live alone. He would be unable to speak at all. We all realized that a ventilator would only selfishly serve to spare us the pain of watching him die. So we ultimately supported his tacit decision to die naturally and on his own terms.

We began round-the-clock hospice care to keep him comfortable and at home. Most days, my Dad would just sit in his chair with his eyes shut. But I knew that, even though he looked like he was sleeping, he was still listening. So I would visit him daily, hug him, and talk to him. When he did open his eyes, I remember that there was still light in them. You could feel the love he felt, even if he could not express it verbally. But he was able to make one thing clear – he was very, very tired.

One of the best things I did as he neared the end was write him a long email not exactly saying goodbye but telling him everything that I needed him to know before he passed away. I told him how much I loved him, how thankful I was for everything he had done for me, and, perhaps most importantly, that I was going to be ok. Shortly after I sent the message, my Dad fell into a coma.

The last week of his life, he was comatose. His breathing was labored and shallow. His extremities started turning purple. Our family began holding 24-hour vigils at his bedside. Someone was always with him, talking to him, and holding his hand. We took turns sleeping. The nurses increased his Ativan and morphine. Finally, they stopped feeding him.

At 7:26 am on June 19, 2016, I received a text from my niece, Michele, telling me that my Dad had passed away. It was Father’s Day. But through the blinding sadness, I felt a sense of peace. He was finally free.

It’s been two months since he passed away. The first month was a blur of funerals, memorial services, and sympathy cards. But that has given way to an almost deafening silence. Trying to move on has been a crushing feat and sometimes I feel completed defeated. But I have a pressing need to make sense of what happened, make peace with it, and try to make some good come from tragedy. While his illness was inhumanly cruel, the experience showed me with excruciating clarity what love truly is and the importance of family in the face of adversity. And perhaps most strikingly, it taught me the meaning of quiet courage. Not once during my Dad’s illness did he express any self-pity, fear, or anger. He handled his diagnosis and subsequent decline with a matter-of-fact dignity and wry humor that is incredibly inspirational. He passed away not defeated and broken, but with grace and in peace.

Rather than helplessly accept his illness, in April 2016, I started working with MDA to raise money in my Dad’s name for their “Lock Up” campaign. The local MDA worked with me to set up a donation website. I set a lofty goal of $10,000. I emailed several dozen of my Dad’s friends and colleagues alerting them to the fundraising campaign. And then I waited.

At first, few donations trickled in. But after a week or two passed, the donations started increasing. I looked through the donor list and realized that I did not recognize many of the names. I wondered how they had heard about the campaign. I then learned that my original email to a few dozen had been passed along to several hundred. I knew that my Dad had worked with and mentored countless individuals throughout his career. I knew that he had lived and worked in several states. But I did not realize how many lives he had touched. We received donations from across the country, from California to Texas to Kentucky. Within a month, we were close to hitting our $10,000 goal. So we raised it to $15,000.

By June 2016, we had raised almost $25,000 in my Dad’s name.

During the fundraising effort, it struck me how many people I knew had personally been affected by ALS, which is still considered a rare disease. I had always assumed that most people’s familiarity with the illness was limited to the “Ice Bucket Challenge,” as mine had been before my Dad’s diagnosis. It was an incredible revelation. We were not alone.

While there remains no appreciable treatment for ALS, my hope is that, in my lifetime, medical science will find a cure. In the interim, I will continue to work and advocate for those who live with ALS and perhaps, in my own small way, honor the man I will always call my hero.