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East County Wednesday, Jan. 20, 2021 1 month ago

Lakewood Ranch man with ALS cherishes every day of life

Family and friends pull together to surround Greenbook resident Jerry Tomasso through ALS struggles.
by: Brendan Lavell Staff Writer

Greenbrook's Jerry Tomasso was quick to interject when his brother, David Tomasso, was asked what gave him the idea to run the first full marathon of his life to support his brother in his ordeal with amyotrophic lateral sclerosis (ALS).

“Brain damage,” Jerry Tomasso joked. “This clown ... 26 miles? If he had (ALS), I wouldn’t run 26 miles for him. I might ride a motorcycle.”

Diagnosed with ALS in July 2016, Jerry Tomasso, 62, has seen his qualify of life compromised, but not his sense of humor.

The longtime New Jersey State Trooper often jokes that he won the lottery when it comes to the life he has lived.

That might be a surprise to hear from someone living with ALS, also known as Lou Gehrig's Disease.

“Nobody knows when they’re going to die,” he said. “I've got to experience a lot.”

His brother wants to make sure he experiences more. 

David Tomasso, who was living in North Carolina, sold his house and moved to Lakewood Ranch's Country Club in 2019 so he could be closer to his elder brother. 

“He knocked on the door and said, ‘What do you need?’” Jerry Tomasso said.

Besides David and his wife, Sherry, Jerry Tomasso has plenty of family support that starts with his wife, Sue. His son John Tomasso is his primary caregiver and his other children are Allison Tomasso and Danielle Ray, along with Danielle's husband, Fletcher Ray.

Jerry Tomasso said his family and friends make him feel fortunate. With so many family members by his side, he said he hasn't never spent a moment alone since the ALS worsened to the point he could no longer walk up stairs about 18 months ago,

His first symptom emerged in December 2015 when he lost movement in his left pinky, even though he still had full feeling in the finger.

“Like a moron, I Googled it,” Jerry Tomasso said.

The first result to appear was ALS. Somehow, he said, he knew right away that he had it.

So he called David, who jokingly told him not to use Google “ever again,” adding that he was getting carried away by assuming the worst. So Jerry Tomasso visited his doctor and said he thought he had ALS, and the doctor agreed with his brother.

“Are you an idiot?” Jerry Tomasso remembers the doctor asking.

The doctor said it was likely a trapped nerve. By July 2016, however, he had lost movement in all his fingers. Once any other possible diagnoses were ruled out, it became clear Jerry Tomasso had ALS.

In December, David ran a virtual marathon through Lakewood Ranch to raise money for the ALS Association. In the weeks leading up to the 26.2-mile run, family, friends and members of Jerry Tomasso’s old motorcycle club put out the word and eventually collected $33,000 for the nonprofit.

Jerry Tomasso is grateful for all the medical professionals who have treated him during his battle against ALS along with the workers at Florida Cancer Specialists who take care of him while he receives infusion treatment.

Jerry Tomasso, Sue Tomasso and Allison Tomasso pose for a 1995 photo in New Jersey, where he worked as a state trooper. (Courtesy of David Tomasso)

David Tomasso said his brother’s positive attitude serves as an inspiration to cancer patients at the Florida Cancer Specialists. He tells them to put on their battle faces, because they still have something for which to fight.

When asked what he has to fight for, Jerry Tomasso pointed to a couple of goals. First, he wants to keep raising money for ALS so that, one day, people can live in a world without the disease. His second reason for fighting his disease as long as he can was simpler.

“Tomorrow,” he said.

Brendan Lavell is a general assignment reporter for the Observer. He earned degrees in journalism and history at the University of Missouri. He has visited 48 of the 50 United States, has a black cat named Arya and roots for the Eagles, Flyers, Phillies, 76ers and Chelsea FC.

See All Articles by Brendan

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