This post was sponsored by Walgreens Cystic Fibrosis Services as part of an Influencer Activation for Influence Central. I received compensation as a thank you for my post.
May is Cystic Fibrosis (CF) Awareness Month but I’m aware of CF on a daily basis. This disease has recently touched my life in a very real way as my son, Bennett, born this past October was diagnosed at 8 days old. It is a parent’s worst nightmare to learn of medical problems in your child and with a disease like Cystic Fibrosis we will be battling this for his entire life. I’m excited to have been named an Ambassador in the Walgreens Cystic Fibrosis Program “CF Champions Navigating the Journey, Together” and have the opportunity to share our CF journey and how we will be raising our son to become a CF Champion.
Cystic Fibrosis affects each person differently but is a complex genetic disease that involves the digestive and respiratory system. Thick mucous prevents the pancreas from releasing digestive enzymes necessary to break down food and absorb nutrients, and causes great damage in the respiratory system by getting trapped deep in the lungs and harboring bacteria that can cause frequent infections. In the 1950s most children with CF did not live past the age of 5 (Source). You can imagine learning about this disease in your child and being completely terrified of what you are being told and what you are reading.
Cystic Fibrosis care has come a very long way in recent decades and current treatments have greatly increased the current average life span to 40 years old (according to our doctor). We are hopeful that with earlier treatment intervention and new drugs that this will only increase and our son can live a long and full life.
In a disease like CF, following a treatment plan is of the utmost importance. The medications available have not only increased the quantity of life but also the quality so that those living with CF today are able to do pretty much anything anyone else can. The treatment is time intensive and not something that most people are even aware of. Between doing nebulized breathing treatments and airway clearance therapy with a vibrating vest (pictured above), CF patients can spend hours EVERY day just doing maintenance for their health. If they are sick they will spend much more time on treatments each day. Maintaining the treatment regimen prescribed by our son’s specialist is, to put it matter-of-factly, live saving and something that we must adhere to.
Bennett is now 7 months old and we are extremely fortunate that he made it through his first cold and flu season with no more than a runny nose for 2 days. But that wasn’t without hard work on our part. As with any new baby we avoided large public places and practiced regular handwashing but we also do daily breathing treatments and chest percussions to help keep him in the best of health. I’m a huge advocate for breastfeeding and I believe that him receiving antibodies through my breastmilk helped tremendously in both his immune and digestive health as well.
Incorporating these time consuming treatments in to our daily lives was a big change and I know that they will only become more labor and time intensive. But, by making them a part of our daily routine they have become our new normal so that even our toddler knows when it is time for Bennett’s treatments. We are thankful for the research that has improved the lives of the 30,000 American’s living with CF today and see a bright future for those born with CF as new medications are extending and improving their lives.
I am beyond thankful that Walgreens has chosen me as an Ambassador in their Cystic Fibrosis CF Champions program and look forward to sharing more about our journey with Cystic Fibrosis and how we plan to become CF Champions as our son grows and encounters all that this disease will throw at us. We will conquer CF as a family by making daily treatments fun, staying physically active, eating balanced diets, and most importantly just enjoying life. While CF will be a part of our lives we don’t want our son to grow up feeling limited or defined by his disease. We wish for Bennett to feel empowered by all that he does on a daily basis to maintain his health and find strength in CF because it is not a disease for the weak.
If you have CF or are a caregiver of someone with CF I would love to hear from you and how you have become a CF Champion!