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New Fairfield family praying for a miracle

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Sunday, June 01, 2008

The small boy smiles, but because of a rare brain disorder is unable to stand or walk.

But, Francesco seems content. The chair supports his hips and feet and allows him to sit by himself in any natural position. A tall wooden device nearby enables him to stand safely upright without his parents having to be in the room.

Francesco has adjusted to the tube from a feeding pump beside his chair that is attached to his stomach to ensure he ingests a high-calorie formula four times a day.

"He`s a very happy boy," Iowa Cipollone said. "He doesn`t speak but he smiles and laughs a lot, and he`s very aware of his surroundings."

Iowa Cipollone, 37, and her husband, Dominic, 43, a middle school principal in the Bronx, N.Y., have been praying for a miracle ever since they learned Francesco had cerebellar vermis hypoplasia - also known as Joubert syndrome - a malformation of the area of the brain that controls balance and coordination.

"We didn`t know there was anything wrong until he was 6 months old," Cipollone said Monday. "It was then that I noticed he wasn`t looking at us, his fists were tight and he just wasn`t developing."

Joubert syndrome is a very rare neurological disorder, where motor activity is slowed and there are abnormal eye movements, according to WebMD`s Web site.

The diagnosis was made in 2005. "It was the worst day of our life," Cipollone said. "We didn`t know what to make of it. We were told he may never walk, talk, see or hear again. We thought that meant he would be a vegetable for the rest of his life."

Determined to challenge the odds, the Cipollones take Francesco to Consolidated School in New Fairfield four times a week for physical, occupational and speech therapy.

Francesco also receives monthly visits from the state Board of Education and Services for the Blind.

Other area residents have thrown in their moral and financial support, since the family`s New York insurance does not cover all their medical expenses in Connecticut.

Dawn`s Pizzazz, a Danbury day spa and beauty salon, is planning a fashion show fundraiser in October. The Molly Ann Tango Memorial Foundation in Ridgefield, a nonprofit organization founded in 2004 to assist families of children with special needs, helped with obtaining medical advice and providing some of Francesco`s special equipment.

Last year, through the Order of Malta, a lay religious order of the Catholic Church, Iowa Cipollone took Francesco on a week`s visit to Lourdes, France, along with 300 other pilgrims.

The Cipollones, who also have a daughter, Isabella, 6, said their faith has played "a really big role" in how they handle their son`s disability.

"We asked for a miracle, and since we came back Francesco has learned to sit on his own and has become more vocal," Iowa Cipollone said.

The family`s pediatrician, Dr. Gary Wenick of Brewster, N.Y., is cautious about predicting the boy`s future.

"Francesco is far behind his contemporaries and will be for many years to come," Wenick said. "He is challenged on many different levels."

Iowa Cipollone said she and her husband are equally unsure of their son`s future.

"We take one day at a time," she said. "We dream that there will be a time when he will say either `Mommy` or `Daddy.`"

Contact Brian Saxton at bsaxton@newstimes.com or at (203) 731-3332.

Copyright © 2006 News-Times Media

 

Author: By Brian Saxton
Source: NewsTimesLive.com
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1.0 from 3 votes
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