I can't believe I found it! This was the letter that we sent out.
Dear Parents,
My name is Sullivan and I love being your child's friend at Auburn First Baptist CDC. I want to explain a little bit about myself. As many of you know I have had tummy problems for a long, long time and on November 21, 2005, we finally found out what was causing them. I was diagnosed with a genetic disorder called Cystic Fibrosis. Mommy, Daddy, and I have really learned a lot about Cystic Fibrosis over the past few months. CF is not something you can catch (like a cold), but happens when your genes combine like when I was growing in Mommy's tummy. It is an incurable genetic disease that affects the respiratory, digestive, and reproductive systems. Basically it makes the salt not transfer quite right between the cells, so all the secretions in my body are thicker than yours. That makes it hard for me to absorb the nutrients from food and gain weight (I know you wouldn't guess that from looking at my big cheeks!). Since the mucous I produce is thicker, it makes my lungs a great spot for bacteria to hang out. If the bacteria get in my lungs, it will cause permanent damage. CF also affects the liver and pancreas.
Until we find a cure, I take lots of medicine to help my body work better. Mommy & Daddy do inhaled medicines and chest therapy on me every day. This will help to keep me as healthy as possible so we can live a long life together as a family.
As far as everything else goes, as long as I stay healthy, I can do everything that my friends can do, although I may get tired a little more easily. Exercise and staying active is my best friend and it will help my lungs stay healthy. I can also eat anything that my friends eat. I just have to take medicine anytime I eat foods with protein or fat in them. That pretty much includes most foods...even gummy bears have protein in them...who would have guessed that?
Mommy & Daddy are doing their best to keep me well. A lot of the different bacteria that make me sick don't make healthy people sick. I have to wash my hands (if they have dirt on them) or use hand sanitizer (I love using it) often. I hope to be able to continue to go to school at the CDC with all my friends, but for now, we don't know if that will happen. The doctor's don't seem to think it is a good idea, but we will just have to see how my health holds up over the next few months.
I have a baby sister who is going to be born sometime within the month. I am very excited about being a big brother and can't wait to meet her. She has a 25% chance of having CF too (just like I did) and we are praying really hard that she doesn't. Please pray for her as well as for Mommy & Daddy & me.
My Mommy & Daddy bought all of my friends a blue bracelet for me to give them for Valentine's Day. I really hope my friends like them. The money raised from the sale of these bracelets will help the CF Foundation to hopefully one day find a cure for me and the other 30,000 young people in the US that have CF too. These bracelets have the word "breathe" on them, which is something that most of us take for granted. This is something that will get harder for me as my CF progresses.
Thank you for reading this letter and learning about my family and me.
Big hugs to you!
Your friend,
Sullivan
Phone number
Email address
**I forgot to add that on the back of the letter I added a CF fact sheet to give the parents a little more information.
