Lily is a happy, energetic and smart 8-year-old. She loves dogs, books, crafts and watching YouTube videos. She doesn’t appear to be fighting a chronic illness, but she is. Every day, cystic fibrosis tries to steal away her health, but Lily fights back, proving her strength while inspiring others.
Lily was diagnosed with cystic fibrosis at birth, and symptoms began to show when she was five months old. She wasn’t gaining weight, so a feeding tube was placed in her stomach for extra nutrition. She underwent various procedures and endured many hospital stays to fight the damage that CF was causing her little body.
In 2012, she began kindergarten. Within a couple of months, her lung collapsed. She was in and out of the hospital for the next four months and had to miss out on her kindergarten year. At 5 ½ years old, Lily was on constant oxygen and 28 pounds.
Lily was approved to receive Kalydeco, a new FDA-approved medicine. She took her first dose on Feb. 1, 2013, and within a few weeks, she showed a huge improvement. Her weight was going up. She no longer needed an oxygen mask. She could run and play without getting winded.
Today, Lily takes Kalydeco twice a day, along with other medications that help her thrive. She does airway clearance vest treatments with various breathing treatments, multiple times a day. These treatments and medications allow her lungs to get rid of the thick, sticky mucus caused by CF and allows her to gain the weight she needs. Cystic fibrosis is a horrible disease that steals the lives of many young children and needs to be fought daily. Lily has shown that she is willing to stay strong and can endure anything that comes her way.