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He loves to stand; they'll help him move

Jacob Bonzeck, 5, has to use a machine to stand, and shouts "Go" when his family rides. Money from Sunday's fundraiser will go toward wheels of his own.

By BETH N. GRAY
Published February 18, 2005

SPRING HILL - Jacob Bonzeck is a little boy trapped in a body that doesn't cooperate.

The 5-year-old son of Shellie and Joe Bonzeck suffers from spastic quadriplegia cerebral palsy. He is physically, mentally and verbally challenged. He faces respiratory and other health complications. Meanwhile, his triplet brothers, Joshua and Jeremy, are "very healthy," Shellie Bonzeck says.

Jacob gets from place to place by rolling across the floor. He yearns to get about more. A motorcycle fundraiser on Sunday is designed to help him do just that.

Jacob has already progressed further than doctors predicted. After he was born, physicians warned his parents that Jacob would never go home. He was discharged from the hospital three months later.

Jacob can say: Ma, Dad, hi, school, bye, and the phrases, "I love you," and "mad again." As he was leaving his most recent doctor's appointment, he told the caregivers, "I'm going, bye. I'm going home,"' Mrs. Bonzeck recalled with pride.

"I don't treat him as handicapped," the 33-year-old mother said. "If I put him in a corner, he'd be a vegetable. I push him and he pushes himself.

"He's a very determined little boy. He has the willpower that would melt anybody's heart."

For instance, Jacob's great-grandmother, Marion Delong, bought him a mobility stander for Christmas. It's a wheelchairlike device in which he can stand. He'll stand in it for as long as three hours, even when his muscles scream with pain.

"As much as he hurts, he cries when he gets out because now you've taken some freedom away from him," Mrs. Bonzeck said. "He would say it was the best gift anybody could give him, if he could talk."

She chokes when talking about the gift. Delong, a Spring Hill resident on a fixed income at age 79, paid $4,000 for the stander.

Everything Jacob needs carries a whopping price. His drinking cup cost $25. Because he is oral sensitive, he requires a special tip on the cup. A high chair equipped for a youngster with Jacob's disabilities is advertised at $5,400. A tricycle with a cage to hold him on its seat and with straps to position his feet on the pedals is priced at $7,000.

For two years, the family has been on a waiting list for a state medical-waiver program that would pay for Jacob's equipment, but funding hasn't been forthcoming, the family said.

Although Joe Bonzeck, 49, is a retired Spring Hill firefighter and now works full time for West Coast Well Drilling & Pump Service, the family must pay $1,500 a month for the triplets' health insurance through the state program, Children's Medical Service.

The insurer declined to pay for Jacob's mobility stander, saying it wasn't necessary for the youngster to stand, the family said.

Mrs. Bonzeck had to give up her job as an accountant clerk in a physician's office because she couldn't be counted on to be at work, with Jacob's doctor's appointments and hospitalizations. From her home, she runs a house cleaning service that employs her two sisters-in-law.

The family has no respite caregiver. The parents could call on a few local relatives to tend to Jacob and his siblings but seldom do.

"If we can't take them with us, we don't go," Shellie Bonzeck said. "I guess it's my own guilt that if something happened to (Jacob), I could never forgive myself."

The family enjoys biking and riding together. Joe Bonzeck rides a Kawasaki street cycle. Shellie and sons Joshua and Jeremy, who have been riding since age 2, motor about on off-road four-wheelers and a dirt bike. Jacob rides as a front-seat passenger on a four-wheeler, shouting, "Go," as the engine revs.

"He likes to ride; he knows he wants to ride," Mrs. Bonzeck said. "When he wants or needs something, he can express himself."

It was at a biking event that the Bonzecks met Rory S. Steele, who happened to be a neighbor. Steele wanted to do something to help. She has organized a Wild Card Wheelchair Ride, a bikers' benefit that aims to raise enough money to buy Jacob a wheelchair, tricycle and more.

The goal is $22,000, she said.

Rev-up begins at 10 a.m. Sunday from Connections Bar at the corner of Cobb Road and Cortez Boulevard.

Steele signed up Trik Daddy's Custom Cycles Inc. of Brooksville as a co-sponsor. The cycle retailer is building a custom motorcycle and will present it to Jacob on Sunday.

Riders will pay $5 to participate in what bikers usually call a poker run. They pick up a card at each of six stops, giving them a wild card in addition to the traditional 5-card poker hand. The 60-to 70-mile route includes stops at Crossroads Bar & Grill in Brooksville, The Kegg off Route 301 in Sumter County, Sleepy Hollow in Floral City, Ramble Inn off Route 19 south of Homosassa and a return by 3 p.m. to Connections Bar in Spring Hill.

Raffles, prizes and food will augment the fundraising, Steele said.

The event and Trik Daddy's donation of a cycle "is better than any money I could raise," Mrs. Bonzeck said. "The more heart-touching part of it is because all these people are doing this because they care."

The Bonzecks never expected to have triplets. For years, they had tried to conceive, without success. Then they turned to in vitro fertilization. Three embryos were implanted, with a 10 percent prediction for fertilization, Mrs. Bonzeck said. The couple were surprised by the outcome.

As the family deals with rearing a health-impaired child, Mrs. Bonzeck said she has been asked more than once if it might not have been better for Jacob not to have survived. "Absolutely, not in a million years, did I wish he'd died," she said. "I guess he makes me know what life's all about. You don't take life for granted anymore."

To find out more on Sunday's fundraiser for Jacob Bonzeck, call Rory Steele at 279-1156

[Last modified February 18, 2005, 00:14:17]