When my little sister SOMER was born, my parents found out that she had Cystic Fibrosis through a "Kiss Your Baby Campaign". The sponsors of the campaign said that if your baby tasted salty when kissed, you should have the child checked for CF. My parents didn't know much about it, but over time they have learned a lot.
The Cystic Fibrosis Foundation says that CF 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; 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 the lives of children and adults with CF. The median age of survival in the last couple of years has been extended to 37, thanks to all of the support and donations from people like you. With your continued support we hope to see the median age of survival raised well into the 40's and beyond.
As I got older I also learned about CF and helped with Somer's treatments by pounding/beating my sister. ;) We had to pound her chest to break up the mucus. Over the years we have tried a lot of things to help her get better like the time we all flew to Taiwan to meet a recommended doctor. We brought home Chinese herbal medication in packets that she had to mix in her applesauce. It smelled really bad and looked disgusting! Parents should not have to fly around the world to find treatment for their child- this is why it is so important to donate to Cystic Fibrosis research.
Somer has spent a lot of time in the hospital, but she has always made the best of her time there. When she was in the hospital at 7 years old she won an award for her Christmas card and has been painting ever since. She even donates her paintings to raise money for CF research.
Now Somer tells the staff how to do things when she goes in for her hospital stays. She is usually in the hospital for at least 6 to 8 weeks every year to receive high doses of antibiotics through her portacath, which is a permanent I.V. on her chest. Some of us know it as her "Thipple." She always has the best decorated room in the hospital and has to use an answering machine to catch her constant phone calls from friends.
When Somer is not in the hospital she tries to live each day to the fullest and make every breath count. She starts and ends her days with a breathing treatment inhaling several different meds that can take up to 2 hours. After she is done with her meds she will do some type of airway clearance in attempt to move the sticky mucus from her lungs. In the mornings she walks on the treadmill to keep those lungs active. She takes up to 25 pills a day, and in addition to the 25 pills before each meal she takes 5 enzymes to help her digest what she is about to eat.
Our parents are founders of the Utah Cystic Fibrosis Chapter and both of them, along with my sister, are very active supporters of this organization. My mother and my sister are currently on the Taste of Salt Lake board. They organize a fantastic night of food, dancing, and a silent auction to raise money for CF. My dad works with the CF golf tournaments. Somer is sponsored by various drug manufactures as a motivational speaker for other Cystic Fibrosis families.
I have always wanted to be more active in raising money for the Utah Cystic Fibrosis Chapter, but I haven't found the best way to do it yet. This year they had Macy's Shop for a Cause and Gateway to Giving, but I don't like shopping. Every year they have the GreatStrides walk, but I don't get out enough to exercise and probably wouldn't make it down the block.
Then I ran across the website FIRSTGIVING and thought that this is the best way I can raise money because I can create a website and email it to all my friends and family. In turn they can email it to their friends and family. Eventually we will have hundreds of people emailing this website to their friends and family so everyone can make even the smallest donation to help find a cure for Cystic Fibrosis. This year I decided to build my sister a website and take my fund raising skills to a higher level. So we came up with LOVE to BREATHE.
I have a new reason to get personally involved in finding the cure for this debilitating disease. About a year ago, before our daughter Makena was born, my wife and I had to get tested because there was a chance that I was a carrier of the defective cystic transmembrane regulatory (CFTR) gene. My test came back inconclusive so they had to do additional testing on me. I went to Primary Children's hospital to get a sweat test (http://children.webmd.com/Sweat-Test). Since they usually do sweat tests on children to determine if a child has cystic fibrosis they had to rig the machine to be able to get the equipment around my arm. A few days later and I was told that I had a rare mutated gene that was dormant so I am a carrier of CF. Thankfully, my wife Tammy does not have the defective gene so our daughter will not have CF.
Please send a link to this story to any of your friends and family who might be able to give even a few dollars to help extend the lives of people like my sister.
