1731 Embarcadero Road, Suite 210
Palo Alto, CA 94303
Have you ever forgotten to brush your teeth? Me, too--it's easy to say it's not going to matter if I just do it tomorrow. However, my six-year-old daughter can't forget to take at least seven medications and do almost an hour of manual lung percussions every day, even though she's been almost totally healthy.
Why? Because she has cystic fibrosis and her daily fight against lung disease is what's going to make the difference today, tomorrow, and in all the future years of her life.
I know what you're thinking: Poor kid, but this isn't something I'm ever going to have to worry about. Let me tell you my story. I knew I was a carrier of a cystic fibrosis gene mutation. When my husband Brad and I became pregnant, I took him to the lab to be tested to see if he was also a carrier. The test came back negative and the pregnancy proceeded like any other. We delighted in the birth of our healthy baby girl and took her home like any blissful new parents. At five months she was hospitalized with rotavirus, with her salt levels dangerously low, yet she recovered with IV fluids and we went on with our lives. She became a classic case of failure to thrive, and the tests began. There has never been a single case of CF in our families. What we didn't know was the basic CF gene test covers only 31 of the most common mutations. Today there are more than 1700 known mutations.
We found out that this was not a death sentence and non profit organizations like CFRI were sharing the incredible progress of medications and therapies?extending the life expectancy every year.
Today, we have hope that Izzy will live a long life. Kendal