YOUNGSTOWN, Ohio (WKBN) – If you’ve ever been to Parto’s Center in Youngstown, you may have seen the owners’ little boy running around.
A few months ago, in an already trying time, the six-year-old and his parents got a devastating diagnosis.
Michael Parteleno has been rapidly losing his sight since he was four. Answers only came after more than a year of tests, doctors and confusion.
“To think that all this time, it was summarized in a three-minute conversation, that he has Batten Disease and that there’s nothing anybody can do and we wouldn’t have him very long,” said Tammy Parteleno, Michael’s mom.
Batten Disease is so rare that only 400 families in the entire country live with it. It’s degenerative, so now little Michael can’t see at all.
“He did once ask me why he was blind,” Tammy said. “He’s learned to adapt… and man, I’m in awe of him, really, because he’s adapted without ever once complaining.”
Batten Disease won’t just take his sight. Although cases vary, it can take his memory, his ability to walk, and ultimately, his life before his 20’s.
“I feel like we’re grieving loss, but the loss hasn’t happened yet and we’re just watching it every day,” Tammy said.
“I put him to bed the other night and it’s just hard to believe he’s really sick and he just looked so peaceful,” said Tom Parteleno, Michael’s dad.
“He told me that he can’t see me anymore and that just kind of broke me again all over,” Tammy said. “I just want him to have the best life he can have for however long that might be.”
Although he only understands that he can’t see, the bubbly six-year-old is still smiling through every day.
But it’s a painful realization for parents of such a young child.
“It no longer matters if he knows his ABC’s because he’s not going to remember them at some point, but I want him to go to the beach. I want him to feel the sand and the water,” Tammy said. “We try to live in the moment and appreciate what we have with him.”
Parto’s Golf Center will be hosting a golf outing at 3:30 p.m. on Sept. 19 to support Michael and his journey with Batten Disease.
There will also be games, auctions and food available.
You can register by emailing email@example.com and calling 239-404-1117.