Join our team - Brooke’s Besties - and help us get one step closer to a cure for cystic fibrosis - a rare, genetic, life-shortening disease that makes it difficult to breathe and damages the digestive system over time.
When Kevin and I decided to start our family after 9 years together, we thought we had planned for everything. During our pregnancy, our doctor informed us that our genetic testing had come back, and we were surprised to find out we were both carriers of cystic fibrosis. Neither one of us had a family history of CF, any warning signs, or any knowledge of it. After meeting with a genetic counselor, we became terrified of the possibility that our daughter would have this terrible disease.
There is no way we could have prepared ourselves for hearing the words, "I’m sorry but your daughter will be born with cystic fibrosis.” It caused a sad, lonely, and desperate feeling that no parent should ever have to feel. That day, that moment, that phone call, will forever be etched into our memories, hearts, and souls.
Unfortunately, receiving a diagnosis of a disease that you know nothing about, other than that it’s incurable, leaves you drowning in uncertainty. Because let’s be honest, becoming a parent for the first time is scary. But becoming a parent for the first time -- during a pandemic -- to a child with cystic fibrosis is just downright terrifying. The emotional climb from feeling shocked and overwhelmed, to inspired and determined has taken time and support. And many reminders that it’s okay to grieve the life you thought you were going to have with your daughter.
Parents raising children with CF have a job like no one else. There are relentless treatments, medicine schedules, clinic appointments, hospital stays, etc. Each day, people with CF complete a combination of the following therapies: airway clearance, inhaled medicines, pancreatic enzyme supplements, and modulator medications. But more than that is the constant anxiety and worry of always wanting to make sure you are doing what is best for your child. Rest assured, we will fight hard and truly work together to give Brooke the brightest life possible. Cystic fibrosis is here to stay and our daughter needs us to pave the way and be her foundation.
Her fight is our fight.
Having a child with cystic fibrosis has inspired us to do all that we can to help fight for a cure. With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. While there is not yet a cure, they’ve come a long way with treatments and guidance for managing and living with this chronic disease. And especially when treatment begins at a young age, the future is brighter than you might think. During the 1950s, a child with CF rarely lived long enough to attend elementary school. Today, many people with CF achieve their dreams of attending college, pursuing careers, getting married, and having kids of their own.
As we have struggled with feelings of isolation, we are even more grateful for the supportive people in our lives. Right now, it seems our support system doesn’t know how to help, and we don’t yet know what we need. We still have a lot of feelings and questions, and don’t quite know where to start.
You may be asking yourself, what can I do to help my loved ones navigate the fear and pain that is CF? You’re already doing it — you’re here, you’re listening, you’re learning, and you’re actively trying to figure out what’s needed. And for that, we thank you.
It's difficult to know where this crazy road will lead. But this we do know: we will take it one day and one breath at a time, with hope leading the way and you on our side. Because luckily for us, we have one of the best support systems around.
We will not let cystic fibrosis stand in Brooke’s way. Together, we can strive for a happy, healthy future for her and thousands of other people who breathe this life and fight this daily battle.
Let’s join forces and add more tomorrows!