In 2014, Jay and Melissa Smith were given the devastating news.
“Jay, you have ALS and have 3-5 years to live. Go home and get your affairs together,” advised the doctor at the Mayo Clinic. They were 35 years old with two girls, Peyton and Loghan, 4 and 6. How were they going to break the news to their girls?
They knew what was coming down the road ... with ALS, patients lose all mobility and eventually their respiratory system shuts down while their minds are perfectly clear. The couple sat and cried.
Jay and Missy both grew up in Bucks County where their parents still live and attended colleges in Philadelphia at University of the Arts and Philadelphia College. Jay worked on his tech inventions at college, inventing his “Viditar,” which bands use when they tour. It was in high demand. They decided to move to Austin, Texas, where manufacturing space was reasonable. He opened his company Livid Instruments where they began manufacturing his software and hardware. He had just been nominated in Popular Science as Inventor of the Year. Their life seemed so perfect.
Fast forward to 2023, almost 10 years later. Jay has lost his ability to speak, walk, eat and he breathes through a ventilator. His mind is perfectly clear and he is beating the odds. Jay has a great sense of humor. At first, his speech was slurred. It’s called “Bulbar Onset” and people thought he was drunk, so Jay had a shirt made that said, “I’m not drunk, I have ALS.” Jay creates posts on Facebook that inspire others to go on fighting. “My favorite one,” his mom said proudly, “Is about comparing himself to Frosty melting away. His message to all of us is, ‘Go run and play before your melt away.’”
Today he has a 450-pound motorized wheelchair and cannot move anything except his eyes. He speaks with his eyes, types with his eyes and steers his wheelchair with his eyes. When he could no longer steer his wheelchair as he had lost use of his fingers, he along with his buddy, Steve Gleason, a former New Orleans Saints player with ALS, invented “Independence Drive,” a program for steering your wheelchair with your eyes. It is available to all disabled at no profit to Jay or Steve.
After raising over $500,000 for research, Jay was told that none of his caregiving expenses and much of his medication were not covered by health insurance for the out of pocket cost of $200,000 a year. They call ALS, the Bankruptcy Disease. So Jay’s family jumped into action and started fundraising.
Jay and his family have served as a resource for other families diagnosed with this horrible disease. “We get many calls from newly diagnosed patients,” says his dad, Gene. “We guide them through resources for clinical trials, technology, and help them plan their fundraisers.”
“People ask me what is the most difficult part of dealing with ALS,” his mom, Barb, says. “Watching your child fade away a little more each day is so sad. I mourn for him every day and wish I could switch places with him. Gene and I are doing everything we can do to make sure they have the funds to pay for his expenses. We are also happy to help other families and also have a foundation which helps others with their out of pocket expenses. We have been blessed with a very supportive community and thank everyone. I can’t imagine what life would look like for Jay and his family without the support.”
Jay and Missy’s daughters are now 14 and 16 and because of all of the support from everyone have been able to live somewhat normal lives. A hero to her family, Jay’s wife, Missy, works full time to pay the monthly expenses and takes care of Jay when his caregivers are not available, no easy task.
The Smith and Mekosh families are hosting a hybrid event on Jan. 27 at the Pine Crest Country Club in Lansdale.
Individals can participate virtually at no cost or come join them in person ($125) for an evening of cocktails, dinner, dancing. Tim Conniff, comedian, as well as Broadway Star Jenny Lee Stern and musician Jamie Stem will provide entertainment. If you register, you will be automatically notified when the bidding opens five days prior to the event.
Register or donate at DoItforJay.org.
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