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’ve 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.
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.
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.
The primary purpose of The Folia Blog is to share the inspiring stories of the parents and patients that we meet in the course of working on Folia. It's truly amazing how families can persevere, and even thrive, in the face of significant challenges - yet their efforts are often unsung. By sharing their stories, we hope to bring the community of parent caregivers closer together, to motivate, empower, and ultimately to drive better health outcomes for their children.
If you are a superhero caregiver, or would like to nominate one, please don't be shy! Rest assured that you're not tooting your own horn - by sharing your story, you are helping to advocate for the community of parents around the world who have had experiences like yours.
We look forward to hearing from you! Watch out for our first Superhero Caregiver profile in the next couple of weeks.