Music Upfront and personal
Austin Hopkins lives with a genetic condition so rare that family members and even doctors can only guess what might happen to him next.
Pollitt syndrome has been documented barely a dozen times worldwide, his parents say. Google searches don't yield much information on people living with the disorder, save for a 2009 Dispatch story about Hopkins and his family's learn-as-they-go journey.
When Hopkins, lost his ability to walk two years ago, the North Side family assumed they'd hit a sad and permanent milestone.
"We thought this was it," said his mom, Patricia Evans. "He'd be in a wheelchair the rest of his life."
Although four doctors thought so, too, the family followed through with a last-ditch referral to Dr. Adolph Lombardi Jr. of Joint Implant Surgeons in New Albany. Lombardi had to read up on Pollitt syndrome, but he wasn't daunted.
"The emotions that day - I can't even describe it," said Austin's dad, Don Hopkins. "He said, 'I'm going to fix your son.' And he did."
Lombardi replaced Austin's right hip last month at Mount Carmel New Albany Surgical Hospital. Already he is out of a wheelchair and getting around with a walker.
"I do more than in my chair," Austin said, smiling.
Life still isn't easy, because Pollitt syndrome causes a host of other abnormalities. Some are as benign as big ears and stubby eyebrows. Others are severe, including impaired physical and mental growth; hearing loss; and an absence of myelin, the body's insulating layer for the nervous system.
For a family who has had to accept so much, the notion that they could reverse, or at least delay, one of Austin's challenges was exhilarating, Mr. Hopkins said.
"I felt that I could help him get up and walk again," Lombardi said. "It's all about quality of life."
He said the biggest concern was Austin's frailty and small size. The surgeon had to find smaller hip-joint devices than are typically available and "be very careful with my approach handling the bones."
He said Austin likely had been living in pain. Before the surgery, his hip was flexed to 90 degrees and he could no longer straighten it.
Now, Evans said, the younger of her two sons is getting back to the simple things that give him joy. "Play with the dog, swing a club, dance," she said.
Mr. Hopkins and his wife still don't know how the disorder might progress. They combed the Internet for years for clues about someone like Austin, finally finding a young man, James Henlan, in Birmingham, England, with Pollitt syndrome who had been abandoned by his family and lived in a care center.
The family flew to Europe four years ago to meet Henlan. "He looks like me," Austin said.
Because Henlan is nearly blind and deaf, Austin's parents left England wondering whether their son would be, too.
For now, though, Austin soaks up sights, sounds and, especially, concerts. Mr. Hopkins hopes to start a charity called Austin's Music Wish Kids, which would work with musicians and production companies to reserve up-front seats for young people with disabilities and illnesses.
Austin has scored prime seats at concerts by Lindsey Buckingham, Dierks Bentley, 38 Special and others. Performers regularly sign his guitar, pose for photographs and marvel at his story, Mr. Hopkins said.
"It's the power, or the magic, of Austin."
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