“Mom, I have been diagnosed with ALS.” Those are dreaded words no parent wants to hear, especially from a 35-year-old son, Jay Smith, who was married with two young daughters, ages 4 and 6. “They are giving me 3-5 years to live and there is no cure or effective treatment.”
It was March of 2014 when Jay, a Doylestown native, was diagnosed with ALS. I remember that I was out walking and stopped dead in my tracks as the tears flowed. Anything but ALS.
In 2013, my husband, former CEO of the YMCA, and I, a former Central Bucks teacher and Realtor, suspected something was terribly wrong. Jay had been slurring his words and having twitching in his arms. He was sleeping a lot, so unlike him.
Jay had always had a tremendous amount of energy, always waterskiing, cooking, building a golf cart, snowboarding. He knew something was seriously wrong. So did we. We sent him to the Mayo Clinic for an evaluation.
A parent never pictures a child having a terminal illness, especially one like ALS, that takes away your body, one motor neuron at a time, eventually leaving you helpless, totally dependent on those around you. “If I could switch places with Jay, I would in a flash,” I told my husband, Gene. But I could not.
Before Jay’s diagnosis, I admit that I did not know much about ALS, Lou Gehrig’s Disease, scientifically called amyotrophic lateral sclerosis. It takes away your ability to move your muscles, one motor neuron at a time, your ability to swallow, and eventually ability to breathe. Your mind stays intact, so you know exactly what is happening to you. A cruel and unforgiving disease.
I remember going out to lunch with Jay for my birthday in May of 2014 and he said, “I don’t want to be a burden, Mom.” My reply, “This disease is not your fault. Let’s give this disease a good fight.” And we sprung to action.
ALS research is grossly underfunded. We immediately opened a foundation and began raising money for research to the tune of $400,000, which we donated to ALS/TDI, the largest ALS research center in the country as well as to Houston Methodist Hospital.
And then reality set in. We discovered that none of Jay’s caregiving and much of his medication was not covered under his health insurance. Our good friend Nancy Frates (her son Pete started the Ice Bucket Challenge and passed from ALS in December of 2019) said, “Start raising money; you’re going to need it.” Great advice, which I give to other ALS families who contact me. As I further researched the “Cost of Staying Alive” as we call it, I was shocked to see that it would eventually cost $200,000 a year out of pocket. Shocking news. It is coined “the bankruptcy disease.”
So we planned our first fundraiser. Family, friends and strangers asked, “How can we help?” There was a lot to do.
Jay continued to progress. In 2015, we were forced to close his tech company, Livid Instruments, which he had worked so hard to build. He needed a van, a $50,000 out-of-pocket expense, so we braced ourselves. I clearly remember the day we had to sell his tent camper and golf cart which he rebuilt with his daughter Loghan. Our granddaughter sat on the front lawn as the buyers of the golf cart and camper drove them away crying, “Mimi, please tell me we won’t have to sell anything else.”
Then Jay began falling and choking on his food. At times as he choked his younger daughter, Peyton, then 5 years old would run up and hide in her room or in the garage.
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