Miles S.

Miles was diagnosed with cystic fibrosis at 13 days old. Everyday Miles wears a airway clearance vest and takes a medicine (Symdeko) twice a day. The medicine helps his cells create salt  and assists his body in absorbing salt which he can’t do on his own. Salt turns his thick sticky mucus which can cause infections and harbor dangerous bacteria, into water-like mucus he can expel. 

Currently, Miles is battling pseudomonas, a life threatening bacteria that affects people with compromised immune systems. He has to be on nebulizer antibiotics twice a day for 28 days on and 28 days off. The antibiotics will hopefully (eventually) eradicate the bacteria, he’s been fighting it for almost 5 years. 

Miles loves riding his bike, going to the beach or on the boat, and being with his friends. He hopes to one day be a veterinarian to help dogs like his best friend, Blu. 

This poor child has had many disappointments at such a young age. Miles has had to miss out on a lot of experiences and activities and celebrations due to his CF. We’ve had to avoid taking him certain places his whole life because of the fear of germs. For example, when he gets invited to play dates or birthday parties, we have to make sure it’s outdoors or At least to a place not does not require everyone touching the same items. When making plans with friends, the first thing we ask is if anyone is sick or has been sick- including having a cough. 

At school, he has to be in the back of the line, has to sit at the end of the tables or away from other children, and sits at the back of the carpet. That way if anyone sneezes or coughs, it won’t come his way. He’s been wanting to be the kind leader for years, but with all the sick kids that come to school, we can’t let that happen. 

Miles’ mutation is considered rare- which means his cells are missing a piece of the “track” that will help produce and absorb salt. Because of this “rarity” the newest miracle drug Trikafta is not currently suitable for him. 

Due to his constant battle with pseudomonas, he had to have a bronchoscopy last summer to see what he was growing on his lungs. The results came back amazing!!! No pseudomonas growth or any other life-threatening bacterias. We were overjoyed. Celebrating him like crazy, only to receive the news that 2 months later the pseudomonas was back.  This time with heavy growth. We thought he had beat this bacteria after his 5 over year battle, but we were very wrong. We were simple heartbroken but knew we had to continue encouraging Miles to fight. 

Recently, Miles said to me “Mom, I want to be an ordinary kid.” As I held back my tears, I said “Buddy, you can’t be ordinary when you’re extraordinary.” 

Miles wishes he didn’t have CF and he verbalizes that to us often. He talks a lot about when HE wins the lottery he’s going to give the money to scientists To find him a cure.