October 25, 2007

Julie Phillips turns hardship into fund-raising

Pre-teen works to help find cure for cystic fibrosis

By Ashley Rodriguez
Times Intern

Eleven-year-old Julie Phillips faces more hardships daily than most people see in a lifetime. On top of balancing school, homework, friends and the adventures of adolescence, Julie has cystic fibrosis.

Julie works hard to not let the disease control her life, but it is a struggle few see and understand, says her mother Stephanie. “Julie looks like the average 11-year-old.” “Nobody would know she is sick and nobody realizes the hard work that goes on behind closed doors.”

The sixth grader at Los Gatos Christian School was diagnosed with cystic fibrosis at birth. She takes 25 pills a day and undergoes 45-minute breathing treatments to stay on top of the disease.

Cystic fibrosis is an incurable, inherited chronic disease that affects the lungs and digestive system. An estimated 30,000 people in the United States are living with CF and just like Julie, exhibit symptoms including salty-tasting skin, persistent coughing, frequent lung infections and shortness of breath.

The cystic fibrosis Web site (www.cff.org) states that about 1,000 cases are diagnosed each year, 70 percent of which are diagnosed by age 2. Both the CFF and Julie’s family are advocates of early-detection awareness. The CFF says that cystic fibrosis is often misdiagnosed as asthma and is very supportive of the newborn screening law that was just passed.

Ninety percent of CFF funding goes straight to research and has led to great strides in hopes of finding a cure. One of the medications Julie takes was introduced in the past five years as a result of the money put to clinical research. Eleven years ago, when Julie was born, the average life expectancy was 18 years. Now the life expectancy is reported as 37 years. That is due totally to research advances.

After growing frustrated with the lack of support for cystic fibrosis fund-raisers in the Bay Area, Julie took things into her own hands. She didn’t understand why there was so much support and press for different types of cancer, but little focus on cystic fibrosis. She gathered her friends and family and presented them with the idea of a having a fund-raiser walk over the Golden Gate Bridge.

Julie sent out a letter to family and friends and asked them to raise at least $200 and was overwhelmed with the support she received. One of the walkers was unsure about being able to raise the $200 that the Phillips family suggested to walk, but was amazed how easy it was to raise over $500. That friend--and the other walkers--was motivated and inspired to have another walk next year and raise even more money.

There were 46 walkers at the event Sept. 16, consisting of close friends and family along with a dozen of Julie’s friends that crossed the Golden Gate on what Stephanie described as “the best sunny day that San Francisco could offer.”

The walkers crossed with pride, determination and hope for the future, wearing matching shirts donated by a cystic fibrosis center.

After crossing the bridge, the walkers stopped on the Marin side to tailgate and let the memories soak in before crossing back over. The whole walk took nearly two hours and offered Julie a chance to savor the moment that all of her hard work brought.

The walk netted more than $6,000, which Julie and her family presented to the director of the local cystic fibrosis branch on Almaden Expressway.

“Having the walk turn out so well proved to Julie that all of her hard work had really gotten the word out there,” said Stephanie. The Phillips family put this walk together on their own. Julie put in all of the hard work to get family and friends to raise money and help spread the word.

The success of the walk has empowered and revived Julie’s will to live her life and not let cystic fibrosis live it for her. Even at 11, Julie knows that her chances of living a long life are dependent on her staying on top of her treatments.

Julie, her friends and family are all committed to doing their part to get cystic fibrosis awareness and support for research and funding out there and are determined to have Julie see a cure found during her lifetime.

Visit www.cff.org to find out how to help Julie find a cure.