Sutton's Story

“After working six years on a pulmonary unit caring for cystic fibrosis patients, I never dreamed I would be faced with the challenge of raising a child with CF,” Sutton’s mother says. “We were six months pregnant with Sutton when we found out both my husband and I are CF carriers. With no family history, the news was heart-wrenching, especially knowing all that I knew about CF. We held out hope that we would have a completely perfect baby…and that’s exactly what we got.”

Sutton was born in California, and his family moved to Nebraska when he was just three weeks old. Despite a positive newborn screening and a borderline sweat-test, his parents were told that Sutton was most likely just a carrier and didn’t have CF. However, he started exhibiting the classic pancreatic insufficient symptoms very early on and he was officially diagnosed with CF in March 2013.

Sutton is so easygoing and a champ when it comes to doing the vest and taking medications multiple times a day. It’s his normal and he acts as though this is what every child does at 15 months old. He smiles, gulps down his meds, sticks his arms in the small slots of the airway clearance system and giggles as he does his daily routine.

“We have never wanted Sutton to feel different or for people to feel sorry for us with a diagnosis of cystic fibrosis,” his mother says. “We are normal, we just had to find that new normal for our family.”

After reaching out to the Cystic Fibrosis Foundation Nebraska Chapter, the family was welcomed with open arms. “They treated us like family from the moment we reached out to them, and lit a spark within us to do our part to find a cure. Full strength ahead, we jumped into social media, raising almost $7,000 in just shy of two months to support the CFF and participate in our first Great Strides event with our team ‘Struttin for Sutton.’ We will continue to be forever grateful to the CFF for the work they do to help assure that Sutton and so many others with CF have a healthy future, and we hold out hope that CF will very soon stand for Cure Found.”