Ryan M.'s Story: Parent's Letter Project Cystic fibrosis- Ryan's mom

Dear parent of a child with cystic fibrosis,

My name is Gina and I have a 6-year-old son. His name is Ryan and he has cystic fibrosis. He was diagnosed at 10 months of age and we have been seen at Children's National Medical Center ever since his diagnosis. This was one of the best and most important decisions that we have ever made.

Cystic fibrosis is a frightening illness to be faced with, there is no doubt about that. However, through the guidance and support of the Pulmonary team at Children's National, we have learned to make Ryan's treatments a part of our everyday life, not something that rules our life. We take his care very seriously and it is through our diligence in being consistent with his treatments and in seeing the care team religiously every two to three months that we are seeing good results with Ryan.

The first year was definitely tough, trying to learn all of the medications, balancing the schedule to get it all done, all while being full-time working parents. Each cold, germy situation, or new medication presents a unique challenge, but you have to put on your coat of armor and face it with a positive attitude.

The Pulmonary team has always made themselves available to address any of our questions and concerns. They truly demonstrate their dedication to improving the quality of life for cystic fibrosis patients as well as their families. This is so very important. On our part as parents, we have to make sure that we are doing the treatments as prescribed, never skipping, and seeing the care team on regular basis. Being involved is crucial.

Believe me, I wish that I could just take this awful disease away from my son because it is definitely not easy. It takes a lot of hard work and dedication, but believe me, it is worth it. I intend to fight this illness with every ounce of my being. And until Ryan is older and can manage the illness himself, as his parent, I am responsible for keeping him healthy.

The way I see it, I have a choice. Either I can lie down, letting cystic fibrosis walk all over me, and say "Why me, why my son?" or I can choose to fight and teach Ryan how to defend himself against this illness. I choose the latter because I want to make sure that Ryan has every opportunity to live a long, happy, and successful life. In my eyes, it is really that simple. I choose to fight and therefore he will be raised with the intuition to fight as well. I assure you, cystic fibrosis may have won the battle, but we are going to win the war.

Sincerely,

Ryan's mom, Gina

Treatment Team

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