First Birthday Party Raises Thousands for PKD Research

Dylin Cenname is not your average child. In fact, at the age of 1, she could possibly be the youngest fundraiser/advocate in PKD history.

Dylin developed cysts on her kidneys before she was ever born. While still in the womb, she was diagnosed with the dominant form of Polycystic Kidney Disease (PKD). Dylin’s mother, Kristen, was diagnosed with both the PKD 1 and 2 genes when she was 25. Kristen is one of the few individuals that have developed ADPKD through spontaneous mutation. Only 10 percent of those who have ADPKD are affected spontaneously.

After Dylin was born, Kristin began to feel depressed and guilty about her daughter having PKD. She wanted to do something to help, but she just didn’t know what to do. When Dylin was 5 months old, Kristin went to bed and had an unusual dream.

“When I awoke, I knew I had to recreate my dream,” she said.

The next day Kristin immediately got on the Internet to research PKD and plan Dylin’s first birthday party. That is when she learned of the PKD Foundation for the first time. After visiting the PKD Foundation website, www.pkdcure.org, Kristen knew exactly how to make a difference in her daughter’s life.

On June 28, 2005, more than 200 people gathered at the Community Aquatic Center in Henderson, NV, for Dylin’s first birthday. But this birthday party wasn’t filled with the ordinary presents, cake and ice cream. Instead, Kristin had organized a fundraising event to raise money for PKD research and educate friends and family about PKD. Out of the hundreds of people that attended the event, very few had actually heard of the disease before Dylin’s party.

The celebration included a silent action accompanied by a pool party for the kids. Kristin asked her Las Vegas community to donate items to be auctioned. The items up for bid ranged from a weeklong getaway at Newport Beach, CA and a batting practice with a major league baseball player to a homemade pasta dinner made by Dylin’s grandma, which sold for $850.

Although a storm kept the pool party inside, the day was a success. By the end of the day, more than $12,000 had been raised for PKD research.

Now Dylin is quickly approaching her second birthday. As she grows, she has experienced very few complications from PKD. During her first year, she struggled with high blood pressure but has overcome it and is now in great health. Kristin and her family are strong in their faith and believe that God and their church family are responsible for Dylin's good health. Despite her medical condition, Dylin is just a little firecracker and has adopted the nickname “Room Wrecker.”

“She is a pistol,” Kristin said. “She is living life to the fullest and doesn’t stop!”

On the outside, Dylin is just a typical one-year-old who loves to dance and who has great rhythm.

At the same time, Dylin continues to inspire her family to make a difference.

Her grandparents, Mike and Mary Villamor, are building a restaurant in order to raise awareness and funds for research to benefit both their daughter and granddaughter. The restaurant will be named Dylin’s Dugout and Sports Grill. It will feature hamburgers, sandwiches and sports memorabilia. Dylin’s grandparents will donate a portion of the revenues to the PKD Foundation in the name of their granddaughter. The restaurant should open its doors sometime in 2006 in St. George, UT.

Kristin has two other children, a son Tyler who is 6 and a daughter Jordyn who is 5. Both children have had ultrasounds and, so far, do not show any signs of PKD.

Tyler and Jordyn are very protective of their younger sister. They always want to attend Dylin’s doctor appointments, and they watch to make sure no one slips their sister any chocolate.

Kristin says that the biggest challenge of having PKD is being able to feel like she is a good mother who is able to take care of her children both now and in the future.

“I don’t want my children to see me suffer in any way,” she said. “It breaks my heart and then gives me inspiration every time I hear my children say in their prayers, ‘Heavenly Father, please take my Mom’s and baby sister’s kidney disease away.’”

Kristin and her family are now involved in the Las Vegas Walk for PKD. Last year Kristin’s team raised more than $1,000. She plans to organize another team this year and continue to be more involved in the newly formed Las Vegas PKD chapter.

“I truly believe that the PKD Foundation is devoted to finding a cure, and I will back them up in any way I can,” she said. “I would never forgive myself if I didn’t try and make a difference.”

Kristin would love to talk with others about her and Dylin’s experiences. If you would like to contact her, please email her at TYJnDsMama@aol.com.