Great Strides/Hayden's Heroes

It's already time for the Great Strides walk again! Nationwide, this is the largest fundraising event the Cystic Fibrosis Foundation has. After Hayden was born, we created the Hayden's Heroes walk team and this will be our fourth year to participate. This year the walk is May 8th at Stars and Stripes Park in Oklahoma City. We need our friends to sign up to come walk with us and be part of our team!!! Typically, team members try to raise money for our team. Even if you can't do that, we want you to come in your HH t-shirt and be a part of our team!

Please go to this website to join our team or make a donation:
www.cff.org/great_strides/alyssasiler
Note: If you have signed up to purchase a cookbook, that is a donation to our walk team. All of the cookbook money will be credited to our team for the walk and then go straight to medical research.

Please go to our new store to purchase our new t-shirts (the design is different this year). I will not be taking orders for shirts individually this year. You can purchase your shirts at our website and they will be shipped directly to you. I realize the shirts are a bit more expensive this year but all profits go to the foundation.
www.cafepress.com/haydensheroes

Finally, here is the link to this year's video. The music and text are the same as last year - I just added new pictures. I usually make a new one every year but last year's still said everything I wanted to say and you just can't beat Mark Schultz wailing on that song!
http://www.onetruemedia.com/shared?p=82156ac1ed91992a7b7f88&skin_id=701

I also hope to have the Hayden's Heroes cookbook published and ready to go by that weekend so I can sell them at the walk. They are hardback, 3-ring binder style with nearly 250 recipes. We are selling them for $20 and all profits will go to the CF Foundation. I am taking orders now so leave me a message if you would like to reserve one.

Here are some pics from last year's GS:

Print Ad for Mrs. O Program Book

Drug Development Pipeline

Wow! What an exciting title I just wrote! I'm sure you are on the edge of your seat to see what I have to say now!
First off, I want to say that I really did intend to write something on this blog every day or, at the very least, every couple of days. Unfortunately, my father has been in the hospital (and in an out of ICU) for the past six weeks now and things are not really calming down with his health. I am trying to keep up a Caring Bridge page for him right now and that is taking up more of my time. I am going to do my best, however, to update over here too!

The Cystic Fibrosis Foundation has something called the Drug Development Pipeline, which you can view HERE. I'm sure it will sound completely odd to you for me to call a bar graph beautiful but that's exactly what it is to me. This graph represents a hope for the future that drives me to get out and raise funds and awareness of the disease and the foundation.

The foundation calls it a "snapshot" of all the drugs and therapies, some in developement and some currently available to patients. They update it constantly. You can see that the most recent update just happened on February 22nd.

Each bar on this graph represents a drug that could save my daughter's life. Each time I see one of those bars move to the right, even just a little, it is a victory. Those bars are the reason we participate in a walk, a gala, a golf tournament and many other fundraisers each year. They are the reason I have twice gone to Washington D.C. for CFF conferences to learn what more I can do to further their progress along. A full ninety cents of every dollar raised by the foundation goes straight to what you see on that graph. I realize it may seem confusing if you are seeing it for the first time but there isn't a CF parent I know who couldn't immediately take you through it, drug by drug, and explain it to you. These medicines and therapies are a huge part of our lives or, in the case of the drugs already to patients, they are a huge part of our every day.

I want to highlight a few things for you. I hope you can feel my excitement as you read my words. If you look at the yellow section toward the top of the graph you will see what I consider to be the most amazing part of our current science. These drugs are the first of their kind to actually address the underlying defect of CF rather than just treating the symptoms. Every therapy Hayden does each day (Hypertonic Saline, Pulmozyme, TOBI, etc) are just trying to thin the mucus she already has so she can cough it up or, in the case of TOBI, they are trying to kill the bacteria that has harbored itself in that thick, sticky mucus. The drugs you see in yellow will actually correct the defect within the cells that the mutation causes - MEANING THE BODY WILL NO LONGER CREATE THE THICK, STICKY MUCUS. This is huuuuuuuggggee! Especially when you consider that these are oral medications! Hayden would take a pill three times a day and that's it! No more three hours a day of treatments and, basically, NO MORE CF.

If you'll look, you'll see that two of those drugs are already halfway through phase 3 drug trials. By the time Hayden is five years old she will probably be taking these medications. This is what the money we raise is accomplishing!!!!!! CF is an orphan disease and the foundation receives no government funding. Every dime spent on these drugs came from the foundation. I am so proud to be associated with a foundation that has as much drive and conviction as the Cystic Fibrosis Foundtion. We have a CEO who refuses to retire because he knows how close we are!

There are many things still to be done. Ultimately, we are still looking for THE CURE. Gene therapy has not come as far along as we would like but they keep trying! Bob Beall, our CEO, is also putting emphasis now on patient access to these drugs when they do come out. They are extremely expensive and he wants to make sure every patient has them, even if they have insurance companies unwilling to pay.

Every time you volunteer for a CF event or donate your money, you are making those bars move. I so badly want to attach the drug developement pipeline to my bio sheet for my pageant interview! Rest assured I will find a way to talk about it. I just wonder if 4 minutes is enough....:)

New Headshots

I got my headshots back today and thought I'd post a few of my favorites:

New Hayden's Heroes Logo

First of all, I had my photo shoot for new headshots this weekend so hopefully I can post them soon!


Ok, I created a new design for our Hayden's Heroes shirts this year. Every May we participate in the CF Foundation's Great Strides Walk. Our walk team is Hayden's Heroes and each year we get people to sign up to walk with us and raise money.


I'm really excited this year because, with my new design, I also created a Cafe Press store where anyone can go online and purchase HH gear! Proceeds go to the CF Foundation. I'll talk more about the walk here pretty soon but for now, here is the new logo and the link to our store.

www.cafepress.com/haydensheroes

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.

Meet my inspiration....

Hayden Presley Siler. Isn't she precious? Now don't let this picture of a sweet and somewhat shy looking little girl fool you. While she is every bit as sweet as the picture implies, her personality is better captured here.....

She's not yelling in this picture. There isn't a mean bone in her body. She is just crazy energetic and more full of joy than any toddler I have ever met. While there are some days where all that energy overwhelms this mama..... I love it. When I look back at her beginning and what she has been through in her short 3 1/2 years, all that energy suddenly becomes a reminder of her strength and endurance - of a spirit that refuses to let anything hold her back.

Every pregnant woman dreams of those first moments when their child is born. They dream of getting to hold their baby for the first time. They can't wait for the chance to study their little face. They just try to imagine the feeling of that instant and very special bond that only a mother and child can have.

I had all those dreams. But after a picture perfect pregnancy and delivery, everything went horribly wrong and suddenly, all those dreams vanished. Immediately after Hayden emerged into this world, the doctors noticed that she wasn't crying. Instead, she was grunting and, on top of that, her belly was extremely distended. I remember so clearly the nurse coming to tell me they needed to take her to the nursery to look at her while trying to sound as if that was the most routine thing ever. Taking her to the nursery to be looked over turned into needing to put a tube down into her stomach, which led to Hayden's pediatrician coming in my room with a somber look on her face. She explained to me that Hayden obviously had an intestinal blockage of some kind because her stomach was full of bile that hadn't been able to pass through. Then came the words.... "She's going to need surgery, Alyssa".

Ryan and I were prepped for the fact that it probably was a twist in the intestines that has formed during pregnancy. They would go in and correct it and that would be that. We would move on with our lives. They also mentioned something about meconium ileus and cystic fibrosis but didn't spend much time on it. The chances of that were slim and they didn't want to scare us.

So Hayden was taken by ambulance to Baptist hospital and Ryan went with her. I was stuck at Lakeside Women's hospital...without a baby. I finally talked them into releasing me early so I could be there when her surgery was performed. Even though I couldn't pick her up and hold her, everything within me was needing to comfort her. I needed her to know I was there.

When the surgeon was finished and came out to talk to us I knew. I knew it wasn't a twist. It was written all over his face that it was something more serious. Then those words meconium ileus and cystic fibrosis came up again. Only this time it wasn't in passing - it was a probability.

The meconium ileus had hardened part of Hayden's intestines so badly that they were destroyed. He removed about 8 inches and reconnected everything back together. He told us that the genetic testing of her blood would take about two weeks to come back with a definitive answer but that we should start preparing ourselves. Our daughter most likely had CF.

Here is a picture of her in the NICU after surgery. I look at this and still can't believe that's her sometimes.She was in the NICU for two weeks and, while she was there, we were visiting with doctors about what CF was and what it meant for our new baby girl - the baby I so desperately wanted to pick up and hold. I heard "thick mucus in the lungs" and things about her digestive system being compromised but all the information was kind of running together - until I heard "life expectancy of 37 years old". I think that's the moment something changed in me. I instantly had a sense of "that's what you think". In my head I was thinking "that is completely unacceptable". I suddenly had a determination to do something about it. It was here that I felt God telling me "I chose you. I chose you because I knew you would do something about it".

Shortly after the blood test came back and her diagnosis was official, Ryan made a decision for our family that we still adhere to today. It showed his strength in this difficult time. He said that we were not going to be a "woe is me" family. That isn't the way to live life and it wouldn't be fair to Hayden. All it would do is hold her back. So the decision was made - instead of putting our efforts into moping or feeling sorry for ourselves, we were going to do what we could to beat this ugly disease.

We took home a two-week-old baby and began giving her enzymes with a spoonful of applesauce before every bottle. We started chest PT and breathing treatments. We did everything we could to adapt. The truth is, we didn't know any different. It was our new normal.

While Ryan and I starting taking on roles and responsibilities within the CF Foundation's OKC chapter, Hayden was taking on a strength that was noticeable to anyone who met her. At a year of age, she reached up and took the nebulizer out of my hand. She was going to hold that for herself, thank you very much. Shortly thereafter, she graduated from chest PT to "the vest". She began wearing it twice a day and, despite the intense shaking, she was fearless her first time wearing it. At age two she needed to have blood drawn for her annual test to check for CF-related diabetes. I was prepped and ready to comfort her. When I heard a gasp come from her mouth I instantly starting singing her a lullaby. A few seconds later I realized that she wasn't crying. In fact, she looked at me and told me "You don't need to sing, Momma". While a felt of moment of extreme pride for my daughter, that moments also broke my heart because a two-year-old shouldn't have to be that strong - but Hayden is different.

At age three she started swallowing her enzymes. She takes three with every meal and they aren't small. In fact, I'm sure there are some adults that couldn't take them. At her last doctor's appointment when it was time for her routine throat swab she shocked me by opening her mouth for Dr. Reyes instead of doing her usual lock-jaw. I knew the swab scared her and that she hated it. After Dr. Reyes was finished she looked at me and asked "Momma, aren't you proud of me? I was a big girl!" I was thinking to myself "Hayden, you have been a big girl since the day you were born."

She is just now starting to ask me why she has to do breathing treatments every day. I'm not ready to tell her she has CF. I tell her that it is to keep her lungs healthy and, so far, she seems satisfied with that answer. She has not allowed any part of her routine to hold her back. She is the fiestiest, most energetic girl I have ever known. She is a force to be reckoned with and she blows me away with her strength.

I wish I could go forever without her knowing she has a life-threatening disease. I wish that Ryan and I could just keep raising funds and awareness of this disease without her realizing what all of it is for. I don't want something to change in her mind that tells her she's different from everyone else.

But the truth is....she IS different. She is different in her joy, in her compassion, and, most of all, in her strength. There is nothing normal about my sweet Hayden Presley, and of that I could not be more proud.