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HUBBARD -- Tom and Tammy Parteleno will host a fundraiser for their 9-year-old son, Michael, at their golf course, Parto's Golf Learning Center, 2231 Coitsville-Hubbard Road, on Sept. 16.
The learning center is part of their overall golf course, Parto's Big on Golf.
This is the fourth annual Michael's Miracle fundraiser.
Michael has a rare terminal illness known as Batten Disease, which is incurable and has a 100 percent mortality rate, as explained on the Big on Golf website.
"All proceeds from the outing will benefit Michael's ongoing medical needs and related expenses," the website states.
According to the Cleveland Clinic, this disease, also known as neuronal ceroid lipofuscinosis, is hereditary and leads to progressive neurological decline because of a buildup of proteins, sugars and lipids (fats) because the cells can't break these down properly.
It's very rare and affects the brain and nervous system. Nervous system function steadily declines, causing a wide variety of neurologic problems, including loss of vision and seizures.
Worldwide, approximately 14,000 children are known to have Batten disease.
In the United States, it affects an estimated two to four out of every 100,000 children.
ABOUT MICHAEL
Michael lost his sight at 4, which was also when he was first diagnosed. Michael is now in third grade.
"He loves animals, dinosaurs, Legos, trucks, music and books," Tom Parteleno said.
He said there are 13 types of Batten Disease and his son has type CLN3.
Michael attends various therapy sessions weekly, including physical therapy and horse therapy to strengthen his core and muscles.
"Michael will continue physical therapy and horse therapy for the rest of his life," he said. "The muscles in his feet have begun to deteriorate resulting in him now wearing adaptive foot supports in his shoes."
Tom Parteleno said some common Batten symptoms are seizures, blindness, dementia, loss of motor skills and the ability to walk, talk and communicate.
LOOKING FOR TEAMS
The event at Parto's Golf Learning Center will include raffles, live music and a silent auction.
Tee times will take place at 9 a.m., 1 p.m. and 4 p.m. Live music will take place between 5 and 8 p.m.
Raffles and the auction will take place 45 minutes prior to tee times.
Tom Parteleno said that he is still looking for teams to help with the event.
To register a team, donate raffle items or sponsor the event, contact him at 239-404-1117.
Those who can't attend can make monetary donations at https://www.gofundme.com/f/gr5qcn-michael039smiracle or send it via Venmo to Tammy-Parteleno.