Phillies partner with Shriners, Raise Your Glass
Young fan with Spinal AVM gets chance to tour ballpark, meet players
PHILADELPHIA -- He's still fighting to gain back the ability to walk again, but that hasn't stopped Adam Perone from donning a Phillies T-shirt every time his team takes the field.
In fact, it's that level of fandom that granted the 10-year-old the VIP experience at Friday night's Phillies-Dodgers game. Perone, who was diagnosed with Spinal AVM (arteriovenous malformation) in October 2011 and is a patient at Shriners Hospital for Children, had the red carpet laid out for him upon his arrival at Citizens Bank Park: a tour of the stadium, a chance to meet the players, on-field access for batting practice and tickets to the game for him and his family.
"It was pretty cool," Perone said.
"Every parent wants to see his or her child happy, and that's what I saw on Friday night," said Adam's mother, Ilona. "Even though Adam was a bit shy and taken aback by all the attention, I could see that he was amazed by everything. He felt special and [excited] to go back to school on Tuesday and share all his experiences with his friends. And that, for me, that was touching."
The Phillies recently partnered with the Raise Your Glass Foundation and Shriners Hospital for Children to bring Perone's fantasy to life. Shriners is a nonprofit organization that treats patients regardless if they have insurance, and is privately funded through donations made by charity organizations like RYG.
"Our experience with Shriners has been amazing," Ilona Perone said. "We have been treated more like partners, not just some parents. Adam has gained so much strength and reached so many goals in the last two years, and he keeps going."
"Shriners has been incredibly important to his rehabilitation," said Michael Perone, Adam's father. "They really are a factory of hope."
Adam Yenish, who created Raise Your Glass Foundation after his son was able to overcome a rare orthopaedic disability because of his treatment at Shriners, was there alongside the Perone family Friday night. This is what Yenish has been working toward -- making children the targets of RYG's efforts.
"We created this charity because Shriners basically treats people with no means for financial reimbursement," Yenish said. "They treat patients based on the fact that they can help them like no one else can. We thought, 'What a better way for us to give back then to create a charity that brings a lot of people together?'"
Until his diagnosis in 2011, Adam Perone was a normal, healthy 8-year-old boy who played soccer for his school. But after backaches and a noticeably lower and slower running gait forced Adam to seek medical attention, an MRI confirmed Spinal AVM.
In early December 2011, Adam was admitted to The Children's Hospital of Philadelphia (CHOP), where doctors attempted to embolize the AVM. However, due to the size of the AVM, his body fought back with swelling, blood clots and hemorrhaging. Four hours after the procedure, Adam could not move from his waist down. He spent three weeks in the ICU of CHOP before being transferred to the Good Shepherd Pediatrics Unit on Dec. 23, 2011.
Adam had to endure a myriad of drug treatments and significant pain over the next few weeks, until one day in mid-February 2012 when something incredible happened. There was a twitch in Adam's right leg.
"We were ecstatic," Ilona Perone said.
Two years ago, Adam Perone was wheelchair-stricken with the inability to move his legs. That's when Shriners swooped in and provided him with the expertise, care and team of doctors that have given him hopes of walking again.
Today, he is able to swim, ride a recumbent bicycle and even walk with special braces.
"We have found that when Adam is challenged, he responds with integrity and a determination that really is inspiring," Michael Perone said. "He continues to stay focused on just being Adam. He sees his condition as a journey that is ongoing in his life."
While Adam's steady physical rehabilitation progress has been impressive, moreso has been his attitude throughout his fight. There's the occasional frustration here and there, but Perone's outlook has remained optimistic from the onset.
"He's always positive. I never hear him complain about anything, other than what the average 10-year-old would complain about," Adam's physical therapist Kim Scharff said. "He's always willing to try anything new that I suggest to him. Even though I know sometimes that he may not want to, he does it. He puts his all in each time."
It's Adam's irrepressible spirit that stuck out to Shriners and RYG. Deeply inspired, the two forces came together Friday night to give Adam the opportunity to venture into the Phillies' broadcast booth, take pictures with his brother, Mark, and the 2008 and 1980 championship trophies, and even meet his favorite player, Jimmy Rollins.
"The smile on Adam's face when Jimmy Rollins came over to him will forever be the signature moment of the day," Yenish said. "It is moments like that you live for."
"[Rollins] was shorter than I thought he'd be," Adam joked.
Michael Perone has witnessed the daily battles his son has fought to get back to the way life was before the diagnosis, and appreciates his son's humor and positivity all the more for it. Michael knows it hasn't been easy for his son, and he was just glad to see Adam get the day he deserves with the team he loves.
"If I'd been diagnosed with something like this, I don't know if I'd be able to handle it the way Adam has," Michael Perone said. "He's my inspiration, and it's a beautiful story."