Friday, September 18, 2009

Team Trevor Fights for a Cure for Cystic Fibrosis


By Barbara Leech
Staff Columnist
KITTERY—
Christie Clifford Salema looks at life and motherhood differently than she did ten years ago. The change began for the Kittery mom of three with a phone call from her son’s pediatrician informing her that her then five-month old baby, Trevor, tested positive for cystic fibrosis.
“Our entire world axis shifted in one second,” Salema says of the fateful day in 1999. “What followed was a dark and ominous year filled with tears, fear of the future and feeling powerless to change anything.”
But from that fear, a power to change the future was born. Salema says after dealing with the diagnosis it became clear she had to do something to fight it, even if it was in a small way. Today, with the help of family and friends, Salema now leads Team Trevor, which since its inception in 2000 has raised more than $900,000 for a cure for cystic fibrosis (CF). In 2008 proceeds from fundraising and donations collected by Team Trevor, including small change from collection cans left at local establishments, totaled $101,000. That money has gone toward research, which over the last decade has produced amazing results in increasing the life expectancy of a child with CF.
Salema says that ten years ago, when Trevor was diagnosed with CF, it was described to her by doctors as a terminal childhood disease. Children rarely lived past their teens or early adulthood. CF affects the lungs making them prone to infection. Scaring from the numerous infections can critically impact the functioning of the lungs. CF also impairs the pancreas, disrupting normal digestion and the absorption of nutrients into the body. Over time other issues such as diabetes can occur.
In the last decade advancements in treatments and medications have increased the chances of children with CF living into their 30s or 40s. But this is thanks to the millions of dollars raised by the national cystic fibrosis foundation and families like the Salemas.
“It cost about $800 million for researchers to finally bring a new drug to market, so what we have done is just a small, small part of that…but it is our part and there are so many of us out there,” she says. “Together it all adds up and we are making a difference.”
Salema says she and her husband Durval did not know the success Team Trevor would have in raising money when they first began. She started after Trevor’s first birthday by taking part in the annual Great Strides Cystic Fibrosis walk in York, which raises money for a cure. That day, she says, she realized she had to do more.
“It is so much better to feel you have contributed somehow to finding a cure rather than succumbing to the depression and the ‘how can this happen to me’ attitude,” Salema says. “This does happen. And raising money for CF gives us hope…and without hope you have nothing.”
So Salema began to organize monthly fundraising events and Team Trevor was formed. Friends and family joined her cause and each year the dollar amount grew, with 100 percent of the money raised going to fight CF. Salema said it was only after the addition of her last two children, Cooper, 6, and Gracie, 4, that she has pulled back on the number of fundraisers because of lack of time. But for the last five years, Salema’s former employer, Oceanside Properties, which operates with Wentworth Charities, joined Trevor’s Team and began hosting a charity golf event each year at the Samoset Resort in Rockport, Maine.
“I have never seen such amazing generosity and such a beautiful event,” Salema says. “It is crazy the help this brings us, because since they operate the place, the expenses are low and the proceeds are amazing. I can not say enough about the kindness of some people who help just because they can…it reaffirms one’s belief in people.”
As for Trevor, Salema says he is an athletic, happy boy. Though his typical day begins very early to use a nebulizer to keep his lungs clear, the Shapleigh Middle school fifth grader does not complain. Each day Trevor requires an average of 21 pills to help with digestion and absorption of nutrients. Salema says her son takes it all in stride.
“To date it has taken something close to 30,000 pills to keep Trevor’s lungs healthy and he understands this is for his health,” she says. “That is my goal as a parent…to keep his lungs unscarred so that the new medications that are close to being released can do their job. My other goal is to raise as much (money) as I can to help those life saving medications make it to market soon.”
For more information or to make a donation please contact teamtrevor.org or www.cff.org. For information on the Annual Wentworth Charities Golf Classic set for Sept. 25-27 visit wentworthcharities.org.
Photo caption: Trevor Salema, 10, of Kittery, was diagnosed with Cystic Fibrosis when he was five months old. Team Trevor, a group lead by his mom Christie, has raised more than $900,000 to date for Cystic Fibrosis. (Courtesy photo)