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Girl's Birthday Wish Is To Help Fight Cystic Fibrosis

Publication: The Southampton Press
By Erin McKinley   May 8, 2012 5:14 PM
May 9, 2012 1:22 PM

Four-year-old Julia Ryvicker was walking around her Manorville home last month when she found a quarter that had fallen off her father’s nightstand and onto the floor. She picked it up and proudly held it out for her mom to see.

“What are you going to do with all that money?” Maya Fox-Ryvicker asked her beaming daughter, expecting to hear her say she was going us it to buy candy or toys.

Instead, her daughter caught her completely off guard when she replied: “I’m going to save it and buy medicine for kids who are sick.”

“It was a surprising answer, but it got me thinking,” Ms. Fox-Ryvicker said this week.

A few days later, Ms. Fox-Ryvicker and her husband, Jeff, discussed the possibility of having a different type of birthday party for Julia, who turns 5 on Friday, May 11. Instead of hosting a traditional affair, they decided to raise money to fight cystic fibrosis, a genetic disease that their friend’s son, Joseph, suffers from.

According to Nancy Rao, the director of the Long Island office of the Cystic Fibrosis Foundation, the disease, which typically affects the lungs and pancreas, is caused by a defect in a protein of the cells. The defect causes mucus to build up, which incubates bacteria and causes deterioration of the lungs and other organs. An estimated 30,000 Americans suffer from the disease, for which there is no cure. The average lifespan of a person diagnosed with cystic fibrosis is 38, Ms. Rao said.

On Saturday, May 19, the Cystic Fibrosis Foundation will be holding the fifth annual “Great Strides” walk in Westhampton Beach to raise money that will help fund research into the disease. An estimated 400 people are expected to be participate in the walk, which aims to raise $7,500 for the organization.

Julia will be holding her birthday party that day at the walk and, in lieu of presents, is requesting that family and friends make donations to the foundation.

“It seemed like fate to have a walk so close to her birthday,” said Ms. Fox-Ryvicker, who also has a 2-year-old son named Jacob. “It worked out perfectly.”

“I think this is such a beautiful thing,” Ms. Rao added. “In lieu of birthday presents, this little girl wants to do the walk instead. It is beautiful and this family is absolutely amazing.”

The fundraiser is a 3-mile walk around Westhampton Beach that will also feature family friendly activities. According to Ms. Rao, there will be food, a deejay and kids stations set up throughout the area to keep walkers entertained. The walk begins at 9 a.m. on the Village Green on Main Street, next to the gazebo.

Ms. Fox-Ryvicker said when she and her husband first talked to Julia about their birthday party idea, she jumped at the chance to help others. Since then, the family has created “Friends of Joseph,” their team for the walk. They are expecting 30 friends and family members to walk with them.

The Cystic Fibrosis Foundation is a not-for-profit that relies on donor support to “attack cystic fibrosis from every angle,” according to the organization’s website, www.cff.org. According to Ms. Rao, the foundation has three main goals: raise money to find a cure, care for those who have cystic fibrosis and advocate for those suffering from the disease.

As of earlier this week, Julia and her family have raised $1,105 in donations, exceeding their goal of $1,000, and they have no plans of slowing down.

Julia and her mother have visited an estimated 20 businesses in the greater Westhampton area, soliciting donations that will be included in a raffle that they are holding on the day of the walk. They have received gift cards and coupons from nearly every business contacted. All money collected from the raffle will be donated to the foundation. Ten chances cost $5 and raffle tickets can be purchased from Ms. Fox-Ryvicker at the walk.

Those interested in making a donation to the “Friends of Joseph” team can visit www.cff.org and click on the “Great Strides” link.

As for Julia, she’s very excited about her upcoming party—even though it will be held eight days after her actual birthday.

“She has already declared this her best birthday ever,” her mother said with a chuckle.

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