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. Hearing their story has helped the Folia team to put things in perspective, and I hope you will find yourself as uplifted as we have by the hope and spirit that Lynn shares with us here.
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.