May 8, 2014 at 1:26 PM
WEST ORANGE, NJ - Sean Squires is a 16-year-old high school junior that just wants to be 'normal', but his life is anything but. Sean has cystic fibrosis (CF), and his everyday routine would be a lot for even the healthiest high school junior to deal with.
A typical day for Sean consists of two 45-minute physical therapy sessions wearing "The Vest," an actual vest hooked up to an air compression device that vibrates his chest. Cystic Fibrosis is considered to be a hereditary disorder. It affects the exocrine glands, which results in the production of abnormally thick mucus and causes blockage in the pancreatic ducts, intestines, and bronchi. Respiratory infections and breathing difficults are frequent and ongoing. The Vest helps to break up some of that congestion.
In addition to the vest, Sean inhales 4 different medicines through a nebulizer; takes 25 pills, including pancreatic enzymes before he eats anything to help digest his food, as well as a variety of antibiotics and other medications, just to try and stay healthy. If he gets sick, the medications increase.
Sean and his family are West Orange residents. His Mom, Jodi, Dad, Bill, sister Sydney (15), and step-sister Ashley, have stood by and supported Sean along each step of his difficult journey. Sean attended West Orange schools until two years ago. To focus on his health, he has been home schooled but plans to return to West Orange High School in the fall for senior year, so that he can graduate with his friends.
CF is considered an 'orphan disease,' meaning that it affects less than 200,000 people (it currently affects 30,000 children and adults in the United States) and as a result, receives very little federal funding for research. However, it is the number one genetic killer of children.
Not many years ago, most children born with CF did not live long enough to attend elementary school. Now the survival rate is well into their thirties, but there is no cure and more research is needed to find ways to lengthen the life span and provide ways for those with CF to lead more 'normal' lives.
On Sunday, May 10, Sean and his family will join other friends, families, and community members for the Great Strides Walk in Verona Park. The walk is the biggest fundraiser of the year for CF and its goal is to raise 42 million this year nationally.
Sean's Pals, the group begun by the Squires family 12 years ago, has raised over $42,000 this year between the walk and other efforts to help fund cystic fibrosis research. They have raised almost 2 million dollars overall since they began their efforts. Sean did not receive his diagnosis until he was five years old, which devastated his family but spurred them into immediate, and unrelenting, action.
"It's hard to keep asking people for donations so we are always trying to find new ways to raise money and awareness," said Jodi Squires. "But until there is a cure, we won't stop".
For more information about Sean's Pals, check out these videos on You Tube:
For more information on the Great Strides Walk, go here to visit their website.