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N.J. family participates in annual cystic fibrosis fundraiser in Verona Park

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Wednesday, April 28, 2010

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The red shirts or rose stickers are the cruelest part of living with cystic fibrosis.

There are no summer camps for kids with cystic fibrosis, no weekend get-togethers, no way for them to bond with others in same situation. Unlike kids with other childhood diseases, kids with cystic fibrosis can’t be around each other.

The chance of passing lung infections is too high.

So at fundraisers and other awareness gatherings, the kids wear red shirts or rose stickers to identify themselves, and keep safe distances. Those who become friends, do so electronically. They play games over the Internet, and call or text rather have face-to-face conversations.

"What other disease is so alienating?" asked Jodi Squires, the mother of 12-year-old Sean Squires. "It’s bad enough they can’t be like other kids, but then they can’t even find any degree of comfort in each other."

"I have a friend with cystic fibrosis named Alex," Sean said. "We play Modern Warfare 2 online. But other than, I’ve never really talked to other kids with it."

Sean is the namesake of Sean’s Pals, the cystic fibrosis fundraising arm that Bill and Jodi Squires started eight years ago when their son was diagnosed with the disease.

On Saturday, May 8 at 11 a.m., Sean’s Pals will gather again in Verona Park for the annual Cystic Fibrosis Foundation’s (CFF) Great Strides Walk. The walks and other events, which takes place mostly in April and May around the nation, are the biggest fundraisers for the CFF and last year raised $35 million to find a cure. A team of Sean’s Pals raised $160,000 last season, the second highest team total in the nation.

"We have so many good people helping us," said Sean’s dad, Bill, who works as a stadium consultant for the Jets and Giants. Last month, the New Jersey chapter of the CFF held an event at the new stadium and raised $75,000, and Giants lineman Shaun O’Hara has made cystic fibrosis the focus of his foundation.

Cystic fibrosis is a somewhat rare congential disease which causes the body to produce a thick mucus that disrupts lung and pancreatic function, the latter which helps the body absorb nutrients from food. Only 30,000 Americans have it.

"It’s what we call an orphan disease," Jodi Squires said. "Because so few people have it, it doesn’t get the attention of government researchers or the pharmaceutical industry. We (families of children with CF) are on our own."

Fifty years ago, children born with cystic fibrosis rarely survived through elementary school. But advancements in medicine and lung-clearing breathing treatments have extended the life expectancy into adulthood.

This year, the CFF’s goal to find a cure took on a greater urgency for Sean. After years of leading a fairly normal life, he became seriously ill last fall.

A lung infection put him in the hospital for 22 days, and 28-pounds fell off his slender frame.

"People need three things to survive: air, food and water. Cystic fibrosis interferes with two of those things," Bill Squires said.

In the fall, Sean got a low-grade fever. Soon a life-threatening infection raged in his lungs.

"It’s a sneaky disease," Jodi said. "Everything seemed to be going so well, and then ... For the first time since he was diagnosed, I was really afraid."

Sean’s recovery from the infection has been slow. "It took a lot out of him," his mother said. "Now spring is here, and he’s getting out on his bike a little, and throwing the ball around with his friend. He’s putting the weight back on, but you’re always worried about going two steps forward, then three steps back."

A high-calorie diet is part of Sean’s treatment, which means nothing is off-limits. Chocolate cake. Ice cream. Whatever he wants, whenever he wants.

"If he’s in the mood for Munchkins, I’ll jump in the car and go down to Dunkin’ Donuts for him," his father said. "If he’s hungry, he gets whatever he wants."

On the Squires kitchen counter is a giant-sized jar of a body-building supplement called "Serious Mass."

His sister, Sydney alternately likes and dislikes that Sean can eat anything he wants. Likes, because there’s always tasty food in the house. Dislikes, because she has limits imposed on her that her brother does not.

"I’m not allowed to eat as much as him," she said.


Copyright 2009 New Jersey On-Line LLC

Author: By Mark DiIonno
Source: New Jersey Online
2.0 from 10 votes
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