Brain Surgery Will Take Place In Arizona––

Fundraising Underway For Jordan Cicchesi

By Dottie Evans

Jordan Cicchesi, 5, son of David Cicchesi of Newtown and Dawn Stevens, was born with a rare brain tumor that will require surgery on June 14 at the Barrow Neurological Institute, St Joseph’s Hospital in Phoenix, Ariz. Jordan’s illness, known as hypothalamic hamartoma, causes gelastic seizures and is associated with poor cognitive and social skills often negatively affecting behavior and appetite.

According to his father, the frequency of the seizures and the subsequent disruption to the brain often makes deterioration of his child’s mental state unavoidable. It is hoped that removal of the tumor will relieve these symptoms.

Jordan has been diagnosed with Pallister-Hall Syndrome. He was born with extra fingers and toes, deformed extremities, and tumors. By the time he was 4 years old, he underwent four operations at the Shriners Hospital in Springfield, Mass., and at Bridgeport Hospital. Further cosmetic surgery will be required when he is older.

When he is able, Jordan attends kindergarten at Middle Gate School. Mr Cicchesi said Monday that he expects Jordan will repeat kindergarten next year.

He added that when Jordan was born, his mother was suffering from chronic Lyme disease and her pregnancy was considered “high risk.”

“With congenital Lyme disease, [Pallister-Hall Syndrome] can result. He looks normal but he can’t always control his behavior,” said Mr Cicchesi, who is currently out of work since he must take care of his son.

David and Jordan Cicchesi are currently living with Mr Cicchesi’s parents, Mary and Mike Piccione of Will’s Road. Although the family has insurance to cover the upcoming operation, funds are needed to help defray costs of travel to Phoenix and estimated one-month’s food and lodging while Jordan is hospitalized and given postoperative treatment.

 

Collection Is Sunday At St Rose Church

“We had hoped to have a dinner as a fundraiser, but there’s not enough time now,” Mr Cicchesi said.

His father-in-law is a retired policeman in Bridgeport where a Brain Tumor Benefit for Jordan Cicchesi has been scheduled June 4 at the Germania Schwaben Club, 416 Horace Street. The buffet dinner will feature the Fairfield Gaelic Pipe Band and costs $40 a person. For tickets, call David Cicchesi at 203-913-7130 or Dawn Stevens at 203-720-1964.

In Newtown, several service organizations have stepped forward, including the Knights of Columbus. Knights president Tom Chiaramonte will be asking for a donation from the congregation of St Rose of Lima Church during Mass on Sunday, May 23.

“We hope the parish community and other Newtown residents will be generous,” said Knights of Columbus member Tom Masher on Monday.

Mr Cicchesi said the Borrow Institute offers state-of-the-art facilities and has done 40 surgeries similar to what his son requires.

A special account has been set up at Newtown Savings Bank in Jordan Cicchesi’s name. Anyone wishing to contribute to the fund should send a check made out to Jordan Cicchesi at Newtown Savings Bank, 250 South Main Street, Newtown, CT 06470.

Further information about hypothalamic hamartoma brain tumor can be found on the web at www.hhugs.com.