In 2014, Jay and Melissa Smith were given the devastating news. “Jay, you have ALS and have three to five years to live. Go home and get your affairs together,” advised the doctor at the Mayo Clinic. They were both 35-years-old with two adorable girls, Peyton and Loghan, four and six.
How were they going to break the news to their girls? They knew what was coming…with ALS you lose all mobility and eventually your respiratory system shuts down while your mind is perfectly clear. They 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, TX 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.
Fast forward to 2023, almost 10 years later. Jay has lost his ability to speak, walk, eat and 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. The condition is 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, Barb, says 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, Jay 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 the 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 was not covered by health insurance (an out-of-pocket cost of $200,000 a year). 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. Missy is our hero. She 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 January 27th, 2024, at the Pine Crest Country Club in Lansdale. You can participate virtually at no cost or come in person ($125) for an evening of cocktails, dinner, dancing and entertainment from local musicians. If you register, you will be automatically notified when the bidding opens five days prior to the event.
You can register or donate at DoItforJay.org.
PHOTO CAP: Jay Smith, with his wife, Missy.