Raising Awareness: Cystic Fibrosis and Williams Syndrome

This month I'm featuring two special little girls who were born with unique health situations. One is the precious daughter of a friend from college who has Cystic Fibrosis and the other is my adorable niece who has Williams Syndrome.

I suspect that you've heard of Cystic Fibrosis before, but at the same time, you may not know much about it. On the other hand, you probably have not heard of Williams Syndrome before. I hope that by sharing these two stories you will be informed about some of the life situations that others around us deal with and that you will get a glimpse at the amazing mothers that brought these two children into the world.

Another reason I want to share these two stories is to raise awareness. I want us to be reminded of the health that we have been given and not to take that for granted. I also want us to be aware that there are those around us that have to work even harder to help their children achieve the normal daily functions that most of us take for granted. I suppose May really is a good month to share not only about the lives of these little girls, but also about their precious moms who work so hard to take care of the children that God has entrusted to them.

In a couple weeks I will share a post about my niece because she will be celebrating the one year anniversary of her very complicated heart surgery. She had this delicate surgery when was only 3 1/2 months old. I still get moved to tears when I think about what that precious little girl went through. But God graciously heard and answered our prayers and brought her through that valley with remarkable results. I can't wait for my sister-in-law to share her daughter's story with you.

Today I will feature Sarah's daughter, Kadi. I asked Sarah if she would share Kadi's story for the reasons I already mentioned, but I also asked that she give some information about a benefit walk that she is leading in just a couple of weeks. At the end of her story is a link to contribute monitarily if you so desire. Please, do not feel obligated to giveSarah is not expecting you to give, nor did she ask that I put this post up in order to raise money. However, I did want to present the opportunity for you to give if so desired.

Here is Sarah's story:

Yes, I was one of those pregnant women. I was in the last month of my 2nd pregnancy, and I was still able to sleep. I never experienced significant morning sickness during either of my pregnancies. I was one of those pregnant women who absolutely loved being pregnant. I never reached that “Get this thing out of me!” point. Don’t get me wrong. I didn’t want to be pregnant forever. I was always ready to meet my babies, but I wasn’t in a hurry. With our first baby, my husband wanted to find out the gender ahead of time, but I didn’t. We found out we were having a boy. :) But this time, we were surprised. I will never forget that moment in the delivery room after my final push when I heard the excitement in my wonderful husband’s voice as he announced, “We have a girl!” Immediately, tears of joy and thankfulness to God filled my eyes.

The next week was full of all the normal adjustments that come with having a new baby. She was eating wonderfully which was a huge blessing. At her one week check-up, she was still under her birth weight, which isn’t too uncommon. We weren’t overly concerned about that. Except…the following day, we received a call from our pediatrician, which wasn’t normal since it was a Saturday. He said that elevated levels in her newborn screen indicated possible cystic fibrosis (CF), but it was probably a false positive. I needed to take her back to the hospital where she was born to have the screening done again, which I did that very day. Five days later, the pulmonology department at Children’s Mercy Hospital in downtown KC called to let me know the results were the same. We scheduled a sweat test, which is the conclusive test for cystic fibrosis, for the following day.

March 7, 2009: my daughter, Kadi Joy, was 15 days old. I received a call from Dr. Carver in the same pulmonology department. He called to inform me that the sweat test done on my daughter the previous day was positive. My fifteen-day-old daughter had cystic fibrosis. Cystic fibrosis is the most common genetic fatal disease in the United States. CF substantially impairs normal respiratory and digestive functions, making the simple acts of breathing and eating a challenge. This was not what we had prayed for the week leading up to this day. All week long, I had been praying that the result would be negative and finished with, “…but not my will, but Yours be done.” Still, my head was spinning and I didn’t know much about CF at the time. Here we are, two years later, and I know nearly everything there is to know about CF.

Looking at my 2 year old daughter today, you would never know there was anything wrong with her health. She appears the average active 2 year old. And she is…but this is because of the medications she takes and the daily breathing treatments she goes through every day. Without them, she would die. She is currently on three oral medications and two inhaled medications. She has a vest she wears during her daily breathing treatment that shakes her (over her chest) at varying intervals for 30 minutes. This helps to loosen the mucus in her lungs, allowing her to cough it out. A CFer having a coughing fit is the equivalent to a non-CFer simply clearing their throat. The vest is one of many Airway Clearance Techniques (ACTs) that CFers can do on a daily basis. Most CFers have to do more than one ACT every day (up to 4).

Kadi is exceptionally, abnormally healthy for a CFer. Each CF mom I have communicated with who has a child Kadi’s age (and often younger) has already experienced multiple hospitalizations and lung infections with their precious little one. Kadi has yet to have a lung infection and has never come close to requiring a hospitalization. Each lung infection requires a guaranteed 2-week hospitalization and leaves permanent damage to the lungs. After I got Kadi’s definite positive diagnosis of CF, I did a lot of research to find out about this disease. I found out that approximately 30,000 children and adults in the United States have CF and there are about 70,000 CFers worldwide. My daughter is one of them. I was shocked when I found out that a double-lung transplant is fairly common in early adulthood. In fact, 14% of the people on the lung transplant waiting list are CFers.

There is absolutely no doubt in my mind that God is sovereign and good. Kadi having CF is not an accident. God is in complete control and He intended for my precious daughter to have this disease. Having said that, as her mother, I will be in the fight against cystic fibrosis for my entire life or until a cure is found. And you can help me in this fight!

On May 14, I’m leading a team called Kadi’s Krew in the Great Strides walk event in Theis Park, downtown Kansas City, to raise money for the Cystic Fibrosis Foundation. The Great Strides walk event is the CF Foundation’s largest most successful fundraiser nationwide. Please help me meet my team fundraising goal of $5,000 by sponsoring me with a donation of any amount as you’re able. No amount is too large or too small.

Advances continue to be made in finding a cure, but your help is needed now, more than ever, to keep up the momentum of this life-saving research. For the first time in the CF Foundation’s history, scientific opportunities are coming at a pace that is exceeding our ability to fund them.

You’ll feel confident knowing that your generous gift is used efficiently and effectively; nearly 90 percent of every dollar of revenue goes to support vital CF research, medical and education programs. Plus, your gift is tax-deductible.

Please send a donation check, made payable to the Cystic Fibrosis Foundation, to my attention (Sarah Bledsoe) at 2832 S. Ann Independence, MO 64057. Or, you may make a secure online contribution at my fundraising website.

Thank you for supporting the mission of the CF Foundation, and thank you for “listening” to my story! God bless!

Sarah Bledsoe

Thank you for taking the time to read Purposeful Homemaking! I hope you sign up for e-mail so you never miss a post. Thanks!


mama to j and bean said...

Thank you for raising awareness about Williams syndrome (and CF!). My youngest son, 20-months old, also has WS. He is amazing, joyful and inspirational. I am looking forward to reading your niece's story! said...

You are welcome Mama to j and bean!! I would love to here more about your family sometime! I'm glad you enjoyed the post about my niece.

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