There’s a special golf outing coming up on September 18th at Parto’s Golf Center in Youngstown.
It’s the second annual Michael’s Miracle Blind Scramble and it’s to benefit the owner’s son, 7-year-old Michael Parteleno, whose been diagnosed with a rare disease that will eventually take his life.
“It was March 16th of last year, 2020, when Tom and I went to meet with the geneticist and we got the diagnosis of Batten Disease,” Tammy Parteleno said. “Honestly it was a couple days of just walking around in a haze I guess is the only way to explain it. We didn’t really know what to do, who to ask, who to talk to.”
Batten Disease is extremely rare, occurring in an estimated 2 to 4 of every 100,000 births in the United States.
“It’s a horrible disease, it’s horrible,” Tammy said.
Michael has already lost his eyesight and short term memory.
“He struggles to communicate and it’s not that he can’t say the word, it’s more so that he can’t get it out, he doesn’t remember it,” Tammy said.
Over time, the disease will shut down his body, robbing him of speech and mobility, likely causing seizures, dementia and forcing him on a feeding tube. While every case is different, he’s only expected to only live 6 to 10 more years.
“He’s seven years old and half of his life his gone,” Tammy said. “Statistically it’s teens, maybe 20. I still don’t understand it, I don’t know why, I’m angry and I’m in that angry mode and so I’m trying to work through that so it doesn’t reflect for him of course but there is nobody to be angry at though. It’s not anyone’s fault, it’s genetics.”
Smiling, laughing and playing, all Michael knows is that he can’t see and his parents Tom and Tammy Parteleno continue to be amazed at how well he adapts.
“Yeah, we just sit back sometimes and watch him and I’m like, in awe, and then there are those mom and dad moments where I’m crying and there is no comfort because there is no comfort, there still is no cure, there is no treatment,” Tammy said.
Like anyone, Michael has good days and bad days, but his health is deteriorating and his parents never know what could happen one day to the next.
“That’s what is scary for me because they have made it clear, you just had a conversation with him and he can communicate with you and it could be just as quickly as tomorrow morning, he could wake up and never be able to talk to me again,” Tammy said.
The grim reality for this family to cope with and navigate, is the fact they will outlive their son.
“It’s been a whirlwind of just trying to figure out how do we go from day-to-day to giving him the best possible life we can give him knowing what we know,” Tammy said.
The only answers they can come up with right now is just letting Michael be a kid.
“I want him to experience the things that kids should experience and enjoy life,” Tammy said. “Don’t give up hope. Even as hard as it is for me to say because I am so angry, but don’t give up hope, he just wants to have fun and live life and be adventurous.”
Tammy says the golf outing and fundraiser isn’t just about getting Michael money, it’s so much more.
“It’s making sure that he has all the services that we can possibly get him to make sure that if for some chance the doctor in Columbus calls us and says hey, we have this clinical trial drug that I can give to Michael, I want him to be in the best, you know he’s had all his therapies, he’s working on his speech,” Tammy said. “I want him to be where they consider that he’s trial ready, that is the word they use for it because it is our only hope. I want him to have anything we can help him with to keep him healthy and ready should she call us.”
If you would like to participate in the 2nd Annual Michael’s Miracle Blind Scramble on September 18th, there are tee times at 9am, 1pm, 4pm and 7pm. Cost is $150 for a foursome of golf. $200 for golf and 1 table of four for drinks, food and music. $250 for a foursome special at 7pm night golf. $100 for a table of four with drinks, music and food. For inquiries, call Tom at (239) 404-1117. Make checks payable to Michael’s Miracle. There will be course games, a basket auction, 50/50 and Silent Auction. Deadline to register is September 15th.
— to www.wfmj.com