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ALS patient makes a difference using only his eyes

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Imagine waking up and the only mobility your have is your eyes.

You cannot move, speak, are on a feeding tube, a suction machine so you won’t choke to death and a trach to keep you breathing. You depend on everyone around you, your caregivers, wife, daughters to bathe you, sit you on the toilet, wipe you, scratch every itch, feed you and suction your saliva every five minutes so you won’t choke. The muscles in your throat are atrophied and you can’t swallow anymore.

These are the daily challenges that ALS patient Jay faces. There is no cure or effective medical treatment and each day this progressive disease makes life more challenging. How would you live your life?

Jay was an avid skier, baseball player, and water skier. In 2014 everything changed when he was diagnosed with ALS. Jay and his wife, Melissa Mekosh, attended Central Bucks West and Smith went on to the University of the Arts. They have two young daughters. As you can imagine the news was devastating, but from day one, Jay was determined to make a difference.

After doing extensive research on ALS, Jay understood what he was facing, a gradual wasting away of your muscles. Jay and his wife decided to face this beast head on and live life with purpose. Jay knew that his efforts most likely would not benefit him as little progress toward a cure had been made in the 75 years since Lou Gehrig famously died from this cruel disease. Smith decided to become proactive.

“I know my efforts may not be in time for me, but maybe I can help another young dad like myself,” he said.

And making a difference he has done.

In June of 2014 he created a non-profit foundation, the 90 Foundation to fund ALS research and to date has raised and donated over $300,000 for medical research to both the research center at Houston Methodist Hospital and ALS/TDI, the largest ALS research center in the world, located in Cambridge, Mass. Jay and his ALS buddies created an advisory group and visited Lisa Murkowski and other politicians in D.C., trying to expedite clinical trials and get “Right to Try” passed.

In 2015, he began falling and losing his voice. Jay purchased a computer software program and began speaking using his eyes. He created programs for adjusting his bed with his eyes, controlling the TV, music, lights and heat with his eyes. Losing the muscles in his throat, Smith went on a feeding tube and eventually a suction machine so he would not choke on his saliva.

He then began blogging on Facebook, giving hope to others through his prolific and humorous posts, attracting 50,000 followers. (Jay Smith, Austin, Texas)

Today the only mobility Smith has is his eyes and he continues to help others and keeps inventing. In April, in collaboration with his buddy, former NFL Saints player, Steve Gleason who has ALS they unveiled “Independence Drive,” a program for steering your wheelchair with your eyes. Independence Drive is now available to all disabled at no profit to them. Many veterans are now using it.

Most recently Navy Veteran, Garrett Smith from Milwaukee, Wisc., returned from serving in Iraq and Afghanistan and was diagnosed with ALS. Since then Garret has lost his speech and all mobility, no longer able to steer his wheelchair. Garrett is married with young children. He was thrilled to hear about Independence Drive.

Garrett said, “I served in Afghanistan and Iraq to give my country freedom. When I returned and was diagnosed with ALS, I lost my freedom. The ability to steer my wheelchair with my eyes has given me my freedom back.”

This past October, Jay was having trouble breathing, so took the big step of trach surgery. He sailed through the surgery and his breathing improved dramatically. However, the care and cost of care spiked to $160,000 a year and climbing, a big game changer. Jay’s biggest challenge today is the out of pocket cost of staying alive.

His wife, Melissa is a true hero, working full time, taking care of their daughters, and often stays up most of the night to take care of Jay. Each year, the Smith and Mekosh families host a fundraiser for Jay’s Medical Trust to help with his medical expenses.

This year, “StandUpForJay#endALS” will be hosted on Saturday, Jan. 25, from 5:30 to 10 p.m. at PineCrest Country Club. There will be a comedy show, sit down dinner, open bar, raffle, silent auction and live auction.
If you would like to help, attend, donate, sponsor, or donate an item for the event, log onto StandUpForJay.com or contact Barb Smith at besmith8000@gmail.com or 215-601-2529 or Patti Mekosh pmekosh@gmail.com or 215-264-7370.

Barbara Smith and her husband, Gene, are 30-year residents of Doylestown and the parents of Jay Smith.

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