A day in the life with Cystic Fibrosis: Where treatments stand now

When the DeLee's son, Fawkes, was first diagnosed with Cystic Fibrosis at his birth almost four years ago, their lives became consumed with one goal: to keep Fawkes healthy.

KENSINGTON, MD. (WUSA9) - If there was ever a family I would trust to put together my house, it would be the DeLee Family. Their house was bright, inviting, color-coordinated and oh-so-organized. Everything had a place and at least to start on this particular Saturday morning, it was all in the intended places too.

We settled on doing the interview in the center of their family room, so I set up the camera in the corner.

Over the next two hours, it became clear as Betsy and Hudson DeLee pointed to things from the couch that they use daily -  their family room mirrors their own lives - every nook and open space is filled with Cystic Fibrosis.

When the DeLee's son, Fawkes, was first diagnosed with Cystic Fibrosis at his birth almost four years ago, their lives became consumed with one goal: to keep Fawkes healthy.

From the corner of the family room, I could see the sterilizing machine that gets rid of germs. It sits next to the dozens of pills and enzymes Fawkes takes to help absorb nutrients. Past the front door you'll see a cart with a vest that Fawkes wears twice a day to break up the mucus in his lungs.

This is their daily life. Vest treatments, enzymes, pills, germ-free...

Hudson said time is one of the biggest factors with dealing with CF. The time it takes to sterilize items, fill pill bottles and negotiate with a four-year-old on why he has to put on a treatment vest again instead of going outside to play with his friends.

Reducing the time it takes to do these treatment is one of his biggest hopes for Fawkes' future; like maybe Fawkes would just have to take one pill in the morning instead of 30 pills every day.

Betsy said she just hopes what they are doing now will help keep him healthy in the future.

"I don't want him to suffer," Betsy said. "I feel like we're making decisions for him to give him the best chance he has."

© 2017 WUSA-TV


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