Breck, mom of 3 including a 3rd-grade CFer, generously shared a post on how she has learned to manage the overwhelming set of to-do’s that come along with this disease.

Hello. We are Brett and Kelby Nicolas.

Our son, Alexander Nicolas, is 11 months old and was diagnosed with Cystic Fibrosis at 10 days old by the new born screening test. He has mutations DF508 and 2789+5G>A.

Kate and her three daughters recently moved to Connecticut due to her husband’s position in the Navy. Her youngest daughter, Lucy, was diagnosed before birth with CF. Now 7 months, Lucy has the biggest smile, she’s starting to crawl, and Kate is in the process of figuring out how to work CF treatments into her family’s life.

We had a great time speaking with Meg Hall, a social worker at Maine Medical who focuses on supporting cystic fibrosis families in both the child and adult clinics. Meg has had the unique experience of being the connector between the families and the healthcare system, and joined us this week to tell us all about why she loves her job.

Our first featured caregiver of 2018 is Jenna, Maine-based mom to Kate, a three (almost four!)-year-old living with cystic fibrosis. Jenna and her husband, Cort, have already become fixtures in the Maine CF community. 

This week in the Caregiver Chronicles, we share the story of Lynn, who has two children living with cystic fibrosis. Lynn and her husband Josh have managed to balance the demands of a double treatment schedule with everything else that comes along with raising two elementary school-aged kids. 

Susan and Ted are a Portland, Maine-based couple with two grown daughters. Hogan, their younger daughter, was diagnosed with CF at age 3. She's now a thriving college student who has lived a remarkably normal life, not defined by her disease. In this post, Susan and Ted share memorable moments of their CF parent journey, and everything that they have learned along the way. 

Chad is an incredible dad and superhero caregiver who donated part of his liver to his infant son. He tells us his story of learning to navigate doctors and insurance companies to get his son the best care possible.

Cindy is a physician with 5 kids, ranging in age from 8 to 19, and is a practicing physician. Her oldest, Marcus, was diagnosed with autism when he was a toddler. Since then, Cindy has become an expert at helping Marcus fit in with his peers and live as normal a life as possible.

June 19, 2017

Mercedes is a full-time professional and mom of two children, ages 2 and 5. Her oldest, Mila, has Down Syndrome, and Mercedes has spent the past five years becoming an expert in helping her daughter to meet and exceed all expectations set for her.

June 19, 2017

Helen and her husband, Paul, have seven kids, several of whom have chronic conditions. Their oldest son, Paul, has Common Variable Immune Deficiency, a condition that makes it difficult for him to fight off infections on his own. This interview will focus on Helen's experience learning to navigate the care for Paul's condition.