While Emma may be all girl, she still loves to fish with her Dad, Curtis, and get dirty from time to time with her Mom, Judy. Emma’s arrival into the world 16 years ago was laced with fear of the unknown as she had been diagnosed with cystic fibrosis (CF) in utero through amniocentesis.
Thankfully, Emma came out of the womb a fighter.
Since birth, Emma has spent more than 250 days in a lonely, boring, and sometimes scary hospital room stuck to an IV pole. By age 4, she had a feeding tube permanently placed to help nourish her underweight frame, and an IV port surgically implanted inches below her collar bone so IV antibiotics could be administered at home to treat her frequent lung infections.
Emma spent the next decade of life slowly but surely drowning from the inside out as CF destroyed her lungs. On July 26, 2016, after spending 65 long days on the transplant list, the Willcox’s received a call that would forever change their lives. In the midst of tragedy, an anonymous family decided to donate their daughter’s lungs to save Emma’s life.
A team of 20 medical professionals opened Emma’s chest to remove the lungs they called “junk” and left beautiful, pink, CF-free lungs in their place. Within 2 weeks of surgery, Emma had dozens of IVs, 5 chest tubes, a central PICC line, 2 pain blocks, and a port removed, and returned home pain-free.
Recovery from transplant was long and arduous. Emma could not be left alone or travel more than an hour away from the hospital for 3 months. She spent multiple days each week at doctor visits and hours at therapy appointments for months to improve her lung capacity. While Emma no longer needed airway clearance or vest treatments, she continues to take pancreatic enzymes (to digest her food), insulin (for CF-related diabetes), and immunosuppressant medications (to suppress her immune system and prevent rejection) for a lifetime. Since Emma’s immune system is “turned off” by immunosuppression, she must also avoid getting sick (EVER!)
As is typical of kids battling chronic disease, Emma takes her fight for life in stride. For her loving parents, however, watching their little girl suffer is unbearable. With each setback, they wonder if they will be given the opportunity to walk their daughter down the aisle one day. But instead of letting despair take hold, Curtis and Judy force themselves to move forward and be strong for the sweet girl that has taught them so much about tenacity and appreciating each day they are given.