Welcome!

Hi friends! I have been thinking about starting a blog for some time now, with the purpose of sharing home design ideas and projects.  Now with the arrival of Sienna and her recent Cystic Fibrosis diagnosis, I figured this would be a great outlet to share updates on our battle against this disease as well as other happenings here in SC.

I will start off by posting the letter sent to family and friends sharing the news of her diagnosis.  This was a big step in accepting the fact that she has CF.  We have moved past the grieving stage and are optimistic about her future!

"Hi friends and family,

As you all know, our beautiful daughter, Sienna, was born almost one month ago on June 7th.  It was a perfect, healthy pregnancy and an easy delivery.  We couldn't be more in love with her!

Within a day or two of birth, all newborns are screened for a number of genetic diseases.  Through this screening, we learned Sienna was a carrier of one of the most common gene mutations for Cystic Fibrosis (DF508).  Her pediatrician assured that she was likely just a carrier of the one recessive gene mutation and not affected by the disease.  She would have to be a carrier of a second recessive gene mutation in order to have the disease (and that was unlikely).

We took Sienna for a diagnostic test called a sweat test a week later. This test measured the levels of sodium chloride (salt) in her sweat.  Individuals with Cystic Fibrosis have a much higher salt output than individuals without CF.

The next day we received the sweat test results and learned that she was not just a carrier, but likely has Cystic Fibrosis as elevated sodium chloride levels were found.  We have additional genetic testing being done and are optimistic that her case is mild, as she currently shows no symptoms of the disease.  She eats well and has gained weight without issue.  We would never know she was sick if it weren't for the screening!

For those of you unfamiliar with CF, it is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). 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

- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food

*From cff.org

We wanted to share this news with you and ask that you keep our family in your thoughts and prayers over the next several weeks, months, and years as we work with our CF clinic to keep Sienna in good health.  There have been huge advancements in treating CF over the past several years and we are hopeful for a cure during her lifetime!

Please visit cff.org if you'd like to learn more about cystic fibrosis.  

Love,

Jen and Joe"