Cystic Fibrosis is somewhat socially popular at the moment. You might have learned about it in the best-seller-turned-movie Five Feet Apart. Or maybe you follow actors and advocates who suffer from the disease, like Travis Flores? Still, chances are good you’re pretty clueless about the details of this grueling illness. For us at Beauty by Earth, CF is close to our hearts. The Barker family, some dear friends of the BBE staff, battle with this disease daily. Their battle brings this disease close to home and spurs on our efforts to raise funds for a cure.
According to the Cystic Fibrosis Foundation, CF is “a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.” This caused by build-up of thick mucus that can harbor bacteria and lead to inflammation and respiratory failure. Those living with cystic fibrosis follow a number of therapies in order to combat the effects of the disease. Many of these regimes require inhaler machines, pancreatic enzyme supplements, and drastic dietary constraints.
Meet the Barkers
Pictured is Caitlin and Nate Barker holding their son, Roen. Fresh-faced with love, they appear to be your average family—raising up one adorable little boy. This already daunting task of parenting a new life comes with an even greater weight: Roen was diagnosed with cystic fibrosis.
Roen’s Story
As his mother Caitlin observes,
Cystic Fibrosis came into our lives unexpectedly, only a few days after our son Roen was born. To anyone that doesn’t know him and even to those who do, Roen looks perfectly healthy. He’s a happy 11 month old boy who loves to dance and clap, play with his dog, and get into trouble wherever he can. While Roen looks very healthy, his body is fighting an invisible battle every day to simply breathe, digest food and function to keep him alive. CF is a progressive, genetic disease that affects many organs of the body including the pancreas and lungs. It causes Roen’s body to make thick, sticky mucus that doesn’t allow his organs to function as they should and can cause persistent lung infections over time that can limit his ability to breathe.
Roen and the Barker Family
We are thankful to say that there have been many recent advancements in medications and treatments for patients with cystic fibrosis, but there is still no cure. There is no government funding for cf research which means that the life-saving therapies that Roen and the entire cf community depend upon are completely funded by public donations. This comes in thanks largely to the CF Foundation, a smart and committed non-profit organization that is completely focused on raising funds for cystic fibrosis research until that cure is found. Our family believes that Roen was born with cf for a reason, and that reason is to make a difference. He will have a direct impact on finding a cure for this monster of a disease so it can no longer consume another child’s happiness and continue to take lives far too soon. We are immensely grateful for every penny and every dollar that helps the cf community and the CF Foundation get one step closer to a cure!
With sincere gratitude,
What We Can Do To Help
As mentioned, organizations such as the Cystic Fibrosis Foundation are dedicated to the expansion of research and the eventual cure of CF. One way is through Great Strides, an awareness walk that raises money for the CF Foundation. Like other walks for a cause, you can register to participate in a national event or sponsor a team through a donation. Roen even has his own team behind him, Roen’s ROARiors, joining many others to provide greater resources for the community.
The Barkers inspire us with their dedication and hopeful outlook at Roen’s condition. They view it not as a burden but rather an opportunity to raise funds for research and help rid the world of CF for Roen and others like him. We’re so thankful to witness their strength in channeling their struggle toward a greater purpose.
There is still significant room for growth in the fight against cystic fibrosis. And, as the government remains fiscally uninvolved, those diagnosed are reliant on the generosity of the public.
Organizations Making a Difference
More than 30,000 people in the US are living with CF. Please join us in supporting research for a cure for CF this holiday! To give now and learn more about what you can do to help fight CF, check out these links below:
Blooming Rose Foundation – Sponsor a membership to provide exercise and health resources for an individual with CF
Lots of Love,
Camille
