CEREBRAL PALSY TREATMENT Boy going to Europe for 'Spider' therapy

The device is designed to help children with neuro-motor disorders.
By WILLIAM K. ALCORN
VINDICATOR STAFF WRITER
BOARDMAN -- Jacob Hostetter might be able to delight in the gift of a lifetime when he turns 5 on May 26 -- the ability to walk more than a few steps without canes.
Jacob, who has cerebral palsy, and his parents, Chuck and Denise Hostetter, are traveling to Poland, Europe, for a month to get "Spider" therapy for Jacob from the inventor of the device, Norman Lozinski.
There are forms of "Spider" therapy in the United States, but they are not the same as the original, which is not yet approved by the U.S. Food and Drug Administration, Mrs. Hostetter said.
The Norman Co., established by Lozinski in 1994, provides therapy using the "Spider" device for children with cerebral palsy and other neuro-motor disorders.
According to the company's Web site, the "Spider" consists of a number of elastic cords of various strengths attached to points on the patient's body at one end and to points on the surrounding construction, such as a cage, on the other end.
The suspension device enables independent and controlled movement as well as strengthening of the affected parts of the body. It is customized for each patient, the Hostetters said.
"Our process was go to the guy who invented the process. The therapy is not considered experimental in Europe," Hostetter said.
What's ahead
In Poland, Jacob will undergo "Spider" therapy five to six hours a day, six days a week for 28 days.
The Hostetters say they have been warned that they may find it difficult to watch Jacob go through the therapy sessions and may have to stay away.
But they are confident Jacob, who now can take two or three solid steps without his canes, will be able to endure the therapy and will benefit from it.
Jacob has "been a fighter from day one," and has a lot of "attitude" and "spunk," his parents say.
"All I want to do is run like my friends," said Jacob, who understands why he is going to Poland. "I'm going to learn to walk."
"We're trying to balance being overly hopeful with the reality of what might happen," his mother said.
But, the Hostetters acknowledge, "we are hoping he comes home walking."
Jacob, the Hostetters' only child, has faced challenges since he was born 14 weeks premature weighing just 1 pound 12 ounces.
Jacob spent the first 10 weeks of his life in St. Elizabeth Health Center's neonatal intensive care unit on a ventilator with feeding tubes in his nose and stomach. While there, he had several blood transfusions and a surgery, his parents said.
Other facts
When he finally came home, he had heart and apnea monitors attached to his tiny body that sounded an alarm when he stopped breathing. The monitors were not removed until he had gone an entire month without the apnea alarm's going off, Mrs. Hostetter said.
After that, Jacob slept in a bassinet next to his parents' bed at night.
"I slept with my hand on his chest to make sure he was breathing," she said.
Today, Jacob, who has some slight tremors and leg spasms and has to wear an ankle foot orthotic boot because he walks on his tiptoes, is mentally "right on cue," his father said.
Jacob plays age-appropriate computer games. He especially likes the "Teen Titans" on television and is very positive and happy and talks all the time.
Hostetter, a 1990 graduate of Canfield High School and a graduate of the Pittsburgh Institute of Art, is special sections manager for The Vindicator. His parents are Pam DiMaiolo in South Carolina and Charles Hostetter in Florida.
Mrs. Hostetter, originally from Ellsworth, is a 1990 graduate of Western Reserve High School. A daughter of Karen and Stephen Ruberto of Ellsworth, she previously was a retail store manager in Akron.
They learned about "Spider" therapy from Mrs. Hostetter's brother-in-law, Thom Hura, who saw something about it on television.
Treatment costs
Because the "Spider" therapy is not FDA-approved, insurance does not cover the expenses. The Hostetters said the trip will cost about $10,000, $6,400 for the treatment and their room and board for a month, and $3,000 for airplane tickets. "It's not expensive when you consider the potential," Hostetter said.
The Hostetters said they have been overwhelmed by the support of their family and the community in the form of fundraisers and private donations.
"It is overwhelming to see how the community backed us up when we needed help. I can't get over it. We are very grateful," Mrs. Hostetter said.
Anyone who wants to contribute money toward Jacob's medical expenses can send a check or money order made payable to the Walk With Jacob Fund at the First National Bank, 7025 Market St., Boardman 44512.
Inspired by a newspaper story about a doctor with cerebral palsy, the Hostetters said they just want to make Jacob as happy as possible and make his everyday activities as easy as possible.
"We look at all that he does and can do if we push him. We are trying as much as we can to prepare him for a productive life," Mrs. Hostetter said.
alcorn@vindy.com