Edmond Life & Leisure Article

There is an article about me and my participation in the Mrs. Oklahoma pageant in this week's Edmond Life & Leisure paper. You can read it HERE. I want to thank photographer and writer, Anne Schmidt, for giving me this coverage.

Edmond Life & Leisure, Anne especially, has been so good to my family and the CF Foundation over the past few years by regularly putting information about the disease and our local fundraising events in their paper.

Right after Hayden was born, my friend Adrienne Nobles wrote a story about my family as a freelance writer for EL&L. Anne came to our house to take a picture of the three of us for the cover of the paper. We instantly connected with her and she immediately loved Hayden.
Since then, Anne has always made sure our gala photos had a page in the paper and she has come to the event every year to take pictures for us - free of charge. I can't tell you how much we appreciate Anne and Edmond Life & Leisure for helping to spread awareness of this disease and all we are doing to fight it.

Here is the story, written by Adrienne Nobles, that was the paper's cover story in October 2006:

It’s a quiet evening at the Siler house in Edmond. Ryan Siler prepares for his next day at work from his computer. Newborn Hayden Siler sleeps peacefully, rocking in her swing. And Alyssa Siler is catching up with an old friend (a.k.a. this writer) over a glass of vanilla ice tea.
As for me, I am discovering a new side of strength and determination in my friend as she and Ryan face a battle for their daughter that is anything but quiet and peaceful.
“What I have realized is all the paths I have taken have not been for me to be a famous Broadway star or a successful model. Rather my life has been preparing me to be a mom to Hayden, to use the tools, experiences and connections I have to help save her life.”
Though you couldn’t tell by looking at her, Hayden Siler is one of approximately 30,000 Americans who have the life-threatening disease Cystic Fibrosis or CF.
For people with the disease, a defective gene causes the body to produce a faulty protein that leads to abnormally thick, sticky mucus that clogs the lungs and can result in fatal lung infections. The mucus also obstructs the pancreas, making it difficult for a person to absorb nutrients in food and can block the bile duct in the liver, causing possibly permanent damage in approximately six percent of people with CF.
Nurses knew almost immediately after Hayden was born on July 5 that something was wrong.
“The nurses only left her on my chest for a couple of minutes, saying they had to get her to the nursery as soon as possible,” explained Alyssa.
Hayden’s abdomen was distended, meaning, at the very least, she had not passed all the toxins out of her body.
She was taken to surgery the day after she was born. Doctors removed eight inches of her colon because of a blockage of bile in her intestines and soon suspected she had CF.
What followed was an agonizing week wait for test results and visits to Neo-natal Intensive Care Unit to see Hayden.
“But every time we were feeling down, it was Hayden who lifted us up. There she was hooked up to all kinds of machines, and she would just look up and smile at us. She showed amazing strength from the beginning.”
That show of strength from little Hayden is a trait she must have inherited from her parents.
The week after the Silers learned of the diagnosis and took Hayden home, Alyssa contacted the local Cystic Fibrosis Foundation office, offering to volunteer and help any way they needed her.
They called a few days later, enlisting Alyssa’s help in securing silent auction items for their Breath of Life Gala, one of the foundation’s largest fund-raisers, set for Oct. 13 at 6:30 p.m. at the Oklahoma City Civic Center’s Hall of Mirrors.
“So, I’ve been using the three hours I have a day between feedings and breathing treatments for Hayden to get these silent auction item,” added Alyssa.
Luckily, Alyssa’s past experiences have made getting the items a bit easier. She’s used her connections from her past experience as a model (you may have seen her featured in the Style section of The Oklahoman), as a judge on “Gimmie the Mike, Oklahoma” on Channel 9, as a Miss Oklahoma top 10 finalist, as a music theatre performer (she appeared in several productions while a student at the University of Central Oklahoma) and as an advertising sales person (she sold ads for the UCO Performing Arts Season brochure as a student) to successful get a variety of items donated for the auction.
Celia Palmer, director of development for the Cystic Fibrosis Foundation’s Oklahoma City office, is excited to have found a resource like Alyssa.
“The thing that continues to impress me and touch me about the foundation is the commitment of the families. On top of the thousands of dollars they spend in treatments and care for their children, they are the first ones to step and donate their time and their money to find a cure for this disease.”
She emphasized that the foundation makes a point to take care of every dollar that is donated, and that 90-cents of each dollar given goes directly to research and treatment of the disease.
“When you donate to the CF Foundation, you are literally adding days, possibly years to a life. In the past 20 years we have been able to increase the average life expectancy for those with CF from 25.6 years to 36.8 years thanks to the research funded by others’ generosity,” added Celia.
One way — and possibly one of the most enjoyable ways — to help is by attending the Breath of Life Gala. In addition to a full Italian buffet, the opportunity to bid on a variety of silent auction items and music from Oklahoma’s own Chris Hicks, guests will get to see nationally-renowned performance artist Michael Israel perform live.
Israel describes his work as “Picasso meets Cirque du Soliel.” Basically, he completes a painting on a spinning canvas, choreographed to music. His works have been purchased by many celebrities and usually sell for $10,000 to $60,000 a piece.
Israel will auction off one of the works he completes live at the gala, plus guests will get to witness the debut performance of one of his pieces created especially for the CF Foundation, inspired by the “65 Roses” story.
“The 65 Roses story comes from the child of a CF volunteer. She was working on an event for CF and her child asked, ‘Are you working on that stuff for 65 roses’ because he couldn’t pronounce Cystic Fibrosis. So, now, 65 Roses has become a symbol of hope for us,” explained Celia.
Tickets to the Breath of Life gala are $75 each, and Celia promises you will be glad you came.
“Your gifts match someone else’s efforts. Your gift funds the research needed to find a cure.”
Right now, in fact, there are more than 25 promising therapy candidates for CF in clinical trials and laboratory development. Any one of them, or a combination of them, could make a profound impact on the lives of people living with CF, people like little Hayden.
”This is not a hopeless disease. A cure could be found in as little as three years — we are seriously that close,” Alyssa said.
Until a cure is found, Alyssa and Ryan believe one of the best treatments for Hayden is a positive outlook and all the love and attention they have.
“I don’t live wearing rose-colored glasses, but we refuse to focus on the ‘what-ifs.” We are taking it day by day. We want to give her the best life possible, and that means celebrating that today was an awesome day with no complications.”
For more information on Cystic Fibrosis, visit the foundation’s website at www.cff.org, or to purchase tickets to the Breath of Life Gala and to find out about other local fundraising and volunteer opportunities, call the Oklahoma City area office at 787-0056.