After years of treatment and surgery, Jon Angelosanto of Independence Township can now take part in the community that has given him so much.
But there’s a problem.
“The irony is we’re finally able to take him out and participate in society and now he’s stuck,” said Katie Angelosanto, his mother. “He can actually feel peace out there, but we can’t get him out there.”
Jon is confined to a wheelchair, and his parents Katie and Joe Angelosanto don’t have funds for a wheelchair-accessible van. They set up a Go Fund Me account for their son, at Gofundme.com/jonangelosanto.
“It was hard to find at first ? we’re really green,” Katie said. “He’s a young man who has great desire to be kind and generous. Unfortunately with his disability and now medication, he struggles. His intent is to be kind and loving.”
“I need a van so I can go places on vacation and go for a break, go to parks, go fishing and see animals, go treasure hunting,” Jon said.
Diagnosed with intractable epilepsy at age 2, the almost 22-year-old has had four brain surgeries since he was 4 years old.
Jon suffered 5-10 grand mal seizures a night until a third brain surgery reduced that number to one a night.
But then they started to increase again, up to 15 a night.
“We needed to do something,” Katie said.
The lastest surgery was in July at the Cleveland Clinic. Doctors performed a hemispherectomy, removing the right side of his brain.
“It was a huge success,” Katie said. “The nocturnal seizures are gone. It was the first time we slept through the night in 22 years.”
Surgeons left in the motor strip in hopes he would recover the ability to walk again.
“That would let us keep him at home and take care of him,” Katie said.
But for now, he is suffering from a continuous motor seizure in his arm and legs, hindering his ability to walk.
They have received help from the government, family, and community, including Our Lady of the Lakes, and the Knights of Columbus of St. Dan’s and Our Lady of the Lakes.
“The Knights built a ramp for us in May,” Katie said. “It’s amazing. They did a beautiful job.”
Joe’s insurance through his work at General Motors has provided good coverage. Expenses it doesn’t cover, however, has previously driven the family to bankrupcy.
Medicaid pays for rides to doctor appointments, but rides to visit family, church, school, and other social events are very difficult to find.
Those are more important than ever, Katie said.
Jon goes to school at Kingsbury Montgomery in Waterford, and previously attended classes at Dutton Farm, a vocational and learning skills center in Rochester.
“If he misses the bus, I can’t drive him,” Katie said. “He’s doing well at Kingsbury. He likes to visit his friends at Dutton Farm. They’re amazing. They have a deep love and flexibility, they’re so compassionate.”
He loves the farm and the animals there, as well as nature and all the outdoors.
“Sometimes I like to go fishing on boats,? Jon said.
“It’s what he misses most,” Joe said.
Cognitively, he’s much more aware and alert than he was before, Katie said.
“He can now work on educational games,” she said. “He never listened to music, but now he can listen for hours. It’s a joy.”
He loves to give presents to people, such as cards and gifts, said his sister Ali Angelosanto, 18.
“He’s my best friend,” Ali said. “He’s smart and really funny. He jokes around all the time. He’s kind of like an inspiration. He’s probably made me a better Christian. He helps me understand more.”
“Individuals with special needs definitly makes you a stronger person,” Katie said. “It’s taught me to be patient.”
The family, also including Marianna, 16, and Evan, 14, turns to their faith for help, especially Jon.
“He’s a greatly spiritual person with deep faith,” Katie said. “He has great faith in Jesus, a great desire to do good.”
“His prayers are so powerful,” Ali said.