I wonder if you can help me with a very special request. I have signed up to walk in the 2012 Cystic Fibrosis Foundation’s annual Great Strides walk to raise money that will help find a cure for cystic fibrosis.
The work of the Cystic Fibrosis Foundation is very important to my family. We experienced quite a shock in January 2005, when my cousin Cayden was initially diagnosed with cystic fibrosis (CF). At the age of 4 months old, she became very sick. She was tested for Influenza A and RSV, but both tests came back negative. They transported Cayden to Sioux Falls via helicopter for further testing. During the ride her organs began shutting down, the critical care doctor on the flight performed a mainline to save her life. She spent six days in pediatric intensive care, before doctors determined that Cayden had an extremely rare strain of the CF genetic defect. Doctors didn’t expect her to live long. She would need to take enzymes with every meal and use a nebulizer and The Vest twice a day to help loosen mucous in her lungs.
My request comes at a very important time for the Cystic Fibrosis Foundation. Since 1955 the Foundation has been striving towards new cures and ways to support CF patients and their families. While there have been many developments over the years, the most recent developments are some of the most exciting yet. On January 31, 2012 the FDA approved the use of a new drug called Kalydeco (known during trials as VX-770), which is expected to address the underlying cause of CF. Only a small percentage of CF patients will be able to use Kalydeco to “cure” their CF; however more research and new drug combinations using Kalydeco are already underway to hopefully help all CF patients.
Our family received the most amazing news on March 8, 2012. We were informed that our precious Cayden would be able to take Kalydeco. With this new medication, Cayden won’t have to take enzymes with every meal, won’t have to use a nebulizer twice a day, and won’t have to use The Vest to loose mucous from her lungs. Kalydeco will give Cayden a chance to have a long, “normal” life!
But none of this would be possible without the Cystic Fibrosis Foundation and supporters like you!
I will be walking with family and friends on 06/02/2012 at Spencer Park in Sioux Falls in honor of Cayden. A donation of any amount would be greatly appreciated. Your charitable contribution is 100 percent tax deductible.
It is with your help and support that we can add “tomorrows” for all cystic fibrosis patients. Thank you!