YOUNGSTOWN, Ohio (WKBN) – A golf outing to benefit a local boy with a rare disease is happening this weekend. His family shared their story of how they came to know Batten disease.
Tammy Parteleno said she noticed something was wrong when her son Michael was about 4 and a half years old.
“We noticed that he started walking around with his head facing in the air like he was looking at the sky,” she said.
Tammy and her husband Tom took Michael to an eye doctor but were met with no luck. Then, things got worse. Michael started running into things because he couldn’t see. Eventually, a specialist suggested genetic testing.
“They did a simple blood test, and the results came back that he has Batten disease, which is a rare neurological disease,” Tammy said.
A disease that has no treatment or cure.
“Time is our friend, but it’s our enemy — for us. His disease is progressive. He could wake up tomorrow and not remember who either one of us are,” Tammy said. “Statistics show that with his type, their lifespan is about the age of 14 or 15 years old. And to put all of that into perspective, he just turned 9.”
Michael is in third grade. He is approximately one of 14,000 people in the world with this rare disease. Tammy said it’s been an emotional roller coaster.
“You know, all the hopes and dreams that you think of for your kids are gone because that will never be for him,” Tammy said.
The Parteleno’s own Parto’s Golf Learning Center in Youngstown. Saturday, they’ll be holding a golf outing fundraiser to raise money for Michael’s medical expenses.
“We have a 2-bedroom house, both bedrooms are upstairs. There’s going to come a point he’s not going to be able to get up those steps,” Tammy said.
Tammy says they’re doing their best to prepare because Michael’s disease could progress quickly, while also staying in the moment and enjoying the precious time they do have with him.
“His world may be dark but man, does he exude brightness,” she said.
The golf outing is scheduled for Saturday, Sept. 16 at Parto’s on Coitsville-Hubbard Road in Youngstown. There will be three separate tee times: 9 a.m., 1 p.m. and 4 p.m.
The outing will also feature raffles, music and food.
If you don’t want to play golf but still want to show your support, you can purchase a table of four that includes dinner and drinks. You can find more information about the outing on the Parto’s website.