Our son, Tobin, is a fun-loving 4-year-old boy. He loves Star Wars and Transformers. He loves to play with his 7-year-old sister, Ainsley, and makes us all laugh. Tobin also has cystic fibrosis.
Tobin's diagnosis was a shock to my wife, Missy, and me, and it reminded us just how much of life is beyond our control. We quickly had to process a range of emotions when we learned about Tobin's CF: sadness, uncertainty, and fear of what was to come.
We are not doctors or researchers, and we can't cure CF alone. We focused on what we could control. We started to learn all we could about the disease, to connect with other families living with CF, and to become involved in our local Cystic Fibrosis Foundation chapter.
Today, we have high hopes for both our children. Ainsley is a gifted speaker, and she can already discuss CF in depth to anyone who will listen. We expect that she'll be a powerhouse when she meets members of Congress at a future Teen Advocacy Day. We like to say that she was born to be a big sister. She cares for -- and is very protective of -- her baby brother. But, she also has her own life and interests, and we can't lose sight of that. We don't want to deny her anything as we seek to keep Tobin healthy and strong.
Tobin goes to school full time and enjoys learning and playing with his friends. He has a sly sense of humor and a loving heart. Tobin lives the life of any other little boy, with a few added-on obligations. He is diligent about hand-washing during cold and flu season. We help him take charge of his daily treatments. He counts his enzymes at every meal and straps on his vest by himself. He does this every morning and every night.
The progress in research and drug development that is being made by the Foundation is encouraging, especially as we think about Tobin's future. He has two copies of the most common CF mutation, which means that he'll be able to take Orkambi® when he is old enough. We are hopeful that by staying on top of his treatments and with the help of Orkambi, Tobin will be able to maintain his health and have a long, productive life.
Of course, this disease is unpredictable so when our son is having a great day, we really appreciate it. And, we take heart in the fact that because of ongoing medical advancements, the CF population is getting older and more than half of people with CF are older than 18. CF is a bad disease, but -- all things considered -- I'd rather deal with this challenge now than at any other point in history. We consider ourselves fortunate.
Before cystic fibrosis became a part our lives, our family was active in local charities, raising money to assist other people in need. Suddenly we found that we were the ones who needed help. At first, asking for this help was uncomfortable. But, I reminded myself that, if I can't fix this for Tobin, I'll do everything I can to help those that can. I'm not a doctor or a researcher. I can't cure CF. As much as I want to, I can't give my son, Tobin, that gift right now. But, with your help, someday, I believe that somebody will.
