Thursday, October 1, 2026
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Jay Mekosh and his wife Melissa grew up in Doylestown where his dad was CEO of the local YMCA and his mom was a realtor and a teacher at Mill Creek Elementary School. Melissa's (also known as Missy) parents owned the Warrington Skating Rink.
In 2010 Jay was at the top of his game inventing technology for the music industry. Jay was in demand. Jay and his family moved to Austin, Texas? to manufacture his technology.
In May 2014, life changed when Jay was diagnosed with ALS. He was forced to shut down his business.
ALS has taken away Jay’s ability to breathe, move, swallow, and eat on his own. Jay is much more than this disease, He’s a father, son, husband, leader, and advocate for others who share his diagnosis. He’s also an ingenious prankster! Just ask his dad Gene who is frequently the recipient of his pranks.
Jay recently answered the following common questions that he is frequently asked. He explained that his eyes “have slowed down a bit, making communication more challenging:”
Question: What is it like everyday living with ALS? What would you want people to know about your challenges?
Answer: Living with ALS every day is like being trapped inside a body that refuses to cooperate while your mind is still fully awake. I’m on life support now with a hole in my neck doing the breathing for me, and total paralysis is my constant companion. Not exactly what I had in mind for my 40s.
Every move, every breath, every itch I can’t scratch; it all requires help. It’s frustrating, infuriating, exhausting. But weirdly, I’ve never been more aware of how deeply I’m loved. My wife, kids, family, friends, caregivers; they show up, carry me literally and emotionally.
Yeah, there’s extreme pain and discomfort, sadness, slow relentless loss, but also laughter. My kids are growing up right in front of me; my oldest is off to college at the University of Tennessee, and my 16-year-old daughter, Peyton, is still sneaking into my room just to say, “I love you.” Those moments are everything. And I’m still me. Still a wiseass finding ways to live fully even from a chair, even with machines keeping me alive.
Question: You are known in your family for your good humor. Tell me about the role of your mindset in coping with what you’re going through, for you, your family, and your caregivers.
Answer: Humor is how I breathe, metaphorically, of course. The machines do the literal breathing these days. But really, it’s how I’ve stayed sane. If I didn’t laugh, I’d cry. And crying’s a mess when you can’t wipe your own tears.
Mindset is the engine that keeps this whole thing running. Not just for me, but for my wife, my girls, and everyone who steps into our world. Things are heavy enough—sarcasm and humor give us some oxygen. They remind us we’re still a family, still in this together, and still allowed to find joy even when things feel impossible.
My daughters, now 16 and 18, have grown up with this disease in the room, but they’ve also grown up with a dad who still cracks jokes with his eyes and still finds ways to connect. My wife Missy has every reason to feel crushed by the weight of this, but she still laughs with me. Still rolls her eyes at my smartass comments. That’s the stuff that keeps us going.
Question: How would you describe your relationship with the future, in terms of how you think about it?
Answer: The future used to be a wide-open road. Now it’s more like a hallway—one step, one blink at a time. But I’m still walking it, in my own way.
I don’t daydream about ten years from now. I focus on today, and maybe tomorrow. I look forward to a soccer game, or a family movie night, or seeing my daughter go off to college. I still make plans—I just don’t get too attached to how they’ll play out. I’m not afraid of the future, but I’m honest about it. I know what ALS does. I know where this ends. But until that day comes, I’m still here, I’m still showing up, and I’m still dreaming—just in smaller, more meaningful doses. And when I think about what really matters, it’s not the timeline. It’s whether I made my girls feel safe. Whether Missy knew how much I loved her. Whether I left something behind worth remembering.
So yeah, I think about the future. But mostly, I try to make today count so much that tomorrow has no choice but to follow.
Jay has battled this terrible disease for 12 years and it’s not easy. None of his caregiving and much of his medication is out of pocket, not covered by health insurance. $4,000 a week, $225,000 a year, a staggering number.
“Thanks to the support of our family, friends and the wonderful Bucks County community we have been able to raise the funds for Jay and his family,” says his dad, Gene.
Please join us on Jan. 24 from 8-9 pm for our FREE virtual event, DoItForJay#26. There will be a feature of “Jay’s Journey” hosted by Broadway star, Jenny Lee Stern and TV host/teacher Richard Curtis. You will be able to preview our auction items: laptops, iphones, vacation getaways, couple’s outings, jewelry and much more. You can register for FREE, donate or sponsor at bidpal.net/difj26.
For questions please contact Barb Smith 215-601-2529 or besmith8000@gmail.com.
