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Another Voice ALS – a curse and a blessing

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In 2014, my son, Jay Smith, who grew up in Doylestown, suspected something was terribly wrong. For the past few months he had twitching in his arms, slurred speech, and was extremely tired.

Jay, his wife Melissa, both Central Bucks graduates and daughter Loghan, 3, and Peyton, 1, had moved to Austin, Texas, in 2010 to build his tech company, Livid Instruments. Relocating to Austin made sense – housing and commercial space was affordable. Austin was the music capital with growing tech companies, music and artists. Perfect for Jay who had invented a controller to control light, sound and images for musicians on tour.

Jay attended the University of the Arts in Philadelphia where he majored in multimedia, graduated No. 1 in his class and received The President’s Award and Artist of the Year award in 2002. He had always been tech savvy. When Jay was growing up, he could assemble any toy without looking at the directions, fix anything around the house, paint, draw, decorate and cook. He was a natural.

While at University of the Arts, the college president, who was from Colombia, recommended Jay’s skills to two very famous Latin musicians, Juanes and Chayanne. Jay began designing their world tours and traveling with them using his controller. Also in 2014, he was named Inventor of the Year by Popular Science for his invention The Guitar Wing, which replaced using a foot pedal. He was at the top of the world.

In 2013 Jay began to slur his words, sleep a lot and his muscles were twitching. “We knew something was terribly wrong,” said his dad, Gene. “I asked him if it was stress and his reply was, ‘I hope so.’”

I called the Mayo Clinic and they had an immediate opening to evaluate him. We remember the day we received the bad news, April 1, 2014 – “You have ALS, no cure or effective treatment and three to five years to live.”

We were all devastated.

Fast forward to 2022 and Jay is outliving the odds. In 2014 he began falling, first needing a cane, then a walker and finally in 2015 a wheelchair. In 2016 and 2017, he could no longer swallow, needing constant suctioning and a feeding tube. And his muscles were in atrophy. In 2018 and 2019 his breathing was labored. He needed a ventilator. In 2019 he realized that he was losing the use of his hands and prepared for it, inventing “Independence Drive,” a program for steering your wheelchair with your eyes. He now steers his wheelchair with his eyes. Jay knows that he may eventually lose use of his eyes so now is working on software for a “self-driving” wheelchair. He’s not giving up anytime soon.

Since 2014 his mind has been perfectly clear. Jay creates Facebook posts that bring people to laughter and tears. “My favorite one is his Frosty the Snowman,” his dad said proudly. “He compared himself to Frosty, running and playing, and melting away. Then his message at the end to all of us was ‘Go run and Play Before You Melt Away.’”

Jay’s journey has had many monumental challenges. He can no longer play with his kids, go on family vacations, hug his wife and help around the house. When he was first diagnosed, his daughter, Peyton, was 4. One day Jay was having his feeding tube flushed out and some of the residue went to his heart causing toxic shock. His daughter sat on the front lawn with her “Cow-Cow” stuffed animal and asked his caregiver, “Is my daddy going to die today?” They had to sell their golf cart jeep, camper and boat they used every weekend. It was a sad day for them. His wife had to go back to work full time to pay the monthly expenses. And as his parents, we began raising money for his care, currently over $200,000 a year out of pocket not paid by health insurance.

A curse and a blessing? It is a blessing because his mind is clear. With that he continues to inspire others with his writing and inventions. A curse because you know exactly what is happening to you and can do nothing about it.

A curse because all of your mobility has been taken away. Can you imagine the frustration? A blessing because it gives us perspective. Every time I have knee pain, I catch myself. My favorite new expression is “If it’s not fatal, it doesn’t matter.” Jay only wishes he had knee pain.

On Jan. 21, 2023 the Smith and Mekosh families are hosting a virtual fundraiser from 8-9 p.m., DoItForJay #endALS, to raise money for Jay’s out of pocket care. Registration and participation are free.

It will be an evening filled with auction items: vacations, electronics, spa packages, sports venues, and more. Watch an inspirational hour of Jay’s story with our hosts Richard Curtis and Jenny Lee Stern.

To register, donate or sponsor, go to DoItForJay.org or contact Barb Smith at 215-601-2529 or besmith8000@gmail.com.


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