Saturday, April 25, 2009

A serious side of the Onion

I know that Kylie's posts have been fun, but today I would like to talk about something serious.

Today, I want to talk about a disease that effects around 70,000 people (world wide).

70,000 people world wide you say, gosh that is just a small fraction of people, but what if I told you that %60 of those 70,000 people were children?

I am talking about a disease called Cystic Fibrosis.

What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
clogs the lungs and leads to life-threatening lung infections; and
obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 40% of the CF patient population is age 18 or older.
The predicted median age of survival for a person with CF is more than 37 years.
Adding tomorrows every day expresses the mission—and results—of the Cystic Fibrosis Foundation’s steadfast efforts to extend the length and quality of life for people with cystic fibrosis (CF). CF presents daily challenges for approximately 30,000 Americans. But life with the disease is far different today than it was 50, 30, or even 10 years ago.
Perhaps the best evidence that many people with cystic fibrosis are living longer is the fact that more than 40 percent of the CF patient population is now age 18 or older. Recently developed therapies and specialized care have enabled people with CF to gain greater control over their disease. So, children and adults are not only living longer, but also living a better quality of life.
People living with cystic fibrosis must follow a regular treatment routine to stay healthy and maintain optimal lung function.
Most often, treatment for cystic fibrosis begins with techniques to trigger strong coughs that help loosen and clear thick mucus from the airways. Of course, airway clearance is just one part of the treatment routine. Nutrition and drug therapies are also important for children and adults with cystic fibrosis.

Now I would like to introduce you to someone living with Cystic Fibrosis.
Meet Joshua

Joshua is 20 months old, and he was diagnosed with CF when he was ten days old. This was the most devastating news new parents could have ever received. His parents thought that Joshua was perfectly healthy. He looked fine, and they thought it was impossible that he could be sick. That's the thing about CF. On the outside these guys look great, but on the inside things are terribly wrong. Joshua has to take several medications and do several difficult breathing treatments every day just to keep his lungs healthy. He cannot absorb fat from his food, therefore, he must take medicine every time he eats just to gain weight. His parents believe that God has helped Joshua stay healthy this far. He has not had any respiratory infections that required hospitalization, and he is in the 90th percentile for both height and weight. They have learned to live with this disease and make the best of their lives with it, but they and thousands like them, would love to see a cure in Joshua's lifetime. Please help us make CF stand for Cure Found instead of Cystic Fibrosis. To learn more about CF and the CF Foundation, visit

On Saturday May 2, 2009 Joshua's mother is going to participate in a walk, called Great Strides. It is the Cystic Fibrosis Foundation's largest and most successful national fund-raising event. You can help Joshua and thousands of children just like him by donating to this great cause.

Joshua is a beautiful baby. I have held this little guy in my arms and loved and kissed on him many times. I love this child and his parents as if they were my own family. If you would like to make a donation to help Joshua and his parents, please click on this link and follow the directions to a brighter future for Joshua and countless others.

Thank you for your support.




Suzanne said...

Hi darling. I've contributed to CF before, but now with so much feral and homeless work on my plate, my dollar is stretched very, very thin. I hope you won't mind if I pass this year. Hopefully I'll be able to contribute next year.

What you're doing is so precious. Joshua is beautiful and I know what he endures because I saw a show on CF a number of years ago. Honestly, I can't imagine how CF kids endure all the pounding on their back. It must be so sore every day. My heart goes out to Joshua. If I can come up with a wee bit of extra money, I'll send it along.

Love you darling. Beautiful post. Thanks for caring enough to make an effort.


Skeeter said...

Hi Cece,

Great post! This is one of those tough diseases that touches almost everyone because, I think, all of us know someone who has it. Thanks for the posting.

Best wishes,


kylie said...

hi cece,
i'm so pleased to see you use the onion for such an important cause.

cf is undoubtedly a burden for families and for sufferers but even without a cure yet all is not lost.. with good care cf sufferers are doing pretty well these days.

i'm sure you'll see joshua live a happy and healthy life


Cece said...

Thanks guys, Joshua has been very lucky so far. If there is a mild form of CF, then that is what Joshua has. But, working as a microbiologist, I know first hand what their cultures look like. Eventually, the microorganisms they have growing inside their lungs become resistant to most antibiotic drug combinations. The organisms mutate and become and thick and gooey and slimey as snot. And It breaks my heart to know that a child has to attempt to breath through all of that. Their cultures are so hard to work up because the organisms mutate so easily from all the medications. And the mutations don't make the organisms weaker. They make them stronger and harder to kill. But thanks to advancements in science, these children are living longer. At the hospital I used to work at, we had an adult CF clinic, so twice a month we would get cultures from them. You sort of begin to know these people through their organisms. You can sort of track their progress by what is growing from month to month in their cultures. And you look at the ages and think, man, this person is younger than me. Or wow, this person is my age. The oldest CF patient I saw was 41. It's a tough disease, but with help, we keep reaching for a cure.

Suzanne said...

I love you Cece. You're the best.


Suzanne said...

Cece, I just thought about something and ran to the kitchen. I'd posted a page from the Sunday paper on the frig about SHARE OUR STRENGTH'S GREAT AMERICAN BAKE SALE. I'll type exactly what's written:

"Share Our Strength's Great American Bake Sale is a national campaign that mobilizes Americans to end childhood hunger by holding bake sales in their communities.

Here's how you can help! Join forces with C&H Sugar, Sandra Lee, spokesperson for the Great American Bake Sale, and Share Our Strength by hosting a Great American Bake Sale in your community. It can made a difference in a child's life today."

You can find them at

Why not organize something similar for CF? This is why I would love to have been a mom! All the bake sales and pot lucks. I would have been in Heaven making 500 cupcakes!!! Oh, and some cakes too. Oh, and I also love baking pies!!! No, I'm not kidding. What fun.

You voluteer at school, so why not ask teachers and staff, whose lives you make easier by the way, to help you plan a bake sale to end CF. It would be so educational for the kids and they'd have a blast helping make and sell all the beautiful baked goods (they'd learn more about math!). You could also get area labs involved (including your own), people suffering with CF, all the moms and dads and the community. What a blast. And perhaps you could get local supermarkets to offer discounts on flour and sugar. Call the local news and see if they'd do a story or at least advertize. Call the local paper and ask for a reporter to write an article and while you're at it, also ask for a reduced advertizing rate!!!

I'm not kidding Cece. Your school could set a precedent. You'd become the model for all schools across America!!! And of course all money raised would go to fight CF. It always begins with one person who has a vision. Good luck if you accept this challenge. And also keep in mind, advertizing is key!!! If you need further details, please don't hesitate to contact my assistant at 555-0654. Oh, right, I don't have an assistant because Gig's lazy ass didn't get me one. Okay, so just call me directly.

I just realized I should start a nonprofit fundraising think tank!!! Or is that a "funny" raising think tank.

I love you!!!

Cece said...

Thanks for the idea, Suze. It sounds like a pretty good idea. I will see what I can do.

Suzanne said...

Hey Cece, You're welcome darling. Now hightail it over to Walker's blog. He has a good one up. Canadians.

Yes, you're welcome!!!

Love you.

Suzanne said...

I don't thing Walker has met Travis. Hummmmmmmm. Travis writes women's romance novels. Hummmmmmmm. You know how those novels always have one really "good" chapter!!! And how you try desperately to find it that first day?!!! Not that I read women's romance novels on a regular basis or anything, but I've read a good 2 or 3 in my day. Are you seeing what I'm seeing? Me too! Travis could write the book, Walker the sex chapter. Walker gets me every damn time. I find myself having to take the shower Kylie so kindly advocates down below!!!

I'll have to make an introduction. Excuse me, I have to put on the tea kettle and find some "man" cookies. What the hell are man cookies?!


Cece said...

"They" always say, "The way to a man's heart is through his stomach!" Is that why hb has gained 75lbs in the 13 years we have been married?