Facing Cystic Fibrosis with Positivity and Love

November Family of the Month

Heather and Michael’s second pregnancy in 2008 had been fairly normal; nothing had been flagged as worrisome as the due date arrived. Within minutes of giving birth to baby Lilly, however, both Michael and Heather knew something was wrong.

That first hour proved to be critical. Lilly was rushed to the neonatal intensive care unit (NICU) and taken into surgery; the infant had a severely blocked bowel and needed a part of her small intestine removed—a procedure that, according to doctors, she shouldn’t have survived.

A Scary Diagnosis for Baby Lilly

After evaluating the circumstances and symptoms, doctors determined that Lilly had Cystic Fibrosis, a lung disease that affects the digestive system as well as other organs. Lilly spent her first nine weeks in the NICU and endured another four surgeries. Even today, she undergoes hours of daily breathing treatments and takes several medications. She still has regular Cystic Fibrosis checkups at least every three months. Her daily treatments will be a constant in her life, but luckily, so will CaringBridge.

Inspiring Community

Lilly’s journey has inspired others within her community. “I had met some new families from my son’s school and a couple of them read a lot of Lilly’s past Journal entries on CaringBridge,” Heather remembers. “Independently, both came up to me and told me how my positivity during this trial was encouraging to them.  That meant so much to me and I hope one day Lilly can look back at my entries and people’s messages to her and be encouraged herself and see how far she’s come!”

A Full and Wonderful Life

Although Lilly lives with Cystic Fibrosis every day, it hasn’t slowed her down. Lilly lives a full life—swimming with her brother at the pool, playing dress-up, going on pony rides and just being a five-year-old. Cystic Fibrosis hasn’t stopped Lilly or her family from enjoying the world.

Lilly has a long journey ahead of her, but she doesn’t let it define who she is. Lilly takes on each new day with a positive attitude and a desire to live life to the fullest.

“Lilly is a fighter and takes everything in stride!” Heather affectionately says. “Most adults couldn’t handle what she does on a daily basis but she does and has a smile and laugh that will melt your heart!”

Inspiring Others

Thank you for supporting families like Lilly’s–and a special thanks to our compassionate donors who keep CaringBridge websites available. Read more inspiring stories.

Comments (4)

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myrna j holt Aug 12, 2014 10:10am
i will keep you in my prayers
Botir Nov 22, 2013 4:29pm
Hi Dustin,I've just been belatedly cctahing up on your posts! To you and all my posting CF friends (Hi Colleen, John and Tyler!), it's great to hear from you and know you're doing well. My love and best to you all!Ann Urban
LIZ Nov 10, 2013 12:19pm
muy buen articulo
Mark Givens Nov 08, 2013 6:48am
Lilly, I'll run the World's Toughest Mudder next weekend with you in mind. Keep us strong.