The Browns

Bethany and Emily Brown
For Information about Bethany and Emily, go to http://www.caringbridge.org/visit/bethanyemilybrown or www.yanceybrown.org
Bethany and Emily are sisters, ages 12 and 10, and are in 6^th & 5^th grade. They have a younger sister & brother. Both have a life-threatening illness called “Cystic Fibrosis” or CF for short. Every day is a fight to keep Bethany and Emily in “good health.” Before their diagnosis in April 2004, at the ages of 4 & 3, we had no idea what CF is. They were born with it but it went undiagnosed for so many years of needless pain and suffering and malnutrition. When they were diagnosed, we were told Bethany (4) was in the last stages of malnutrition & would not have lived to see her 5^th birthday without intervention.

CF is an inherited chronic disease that affects the lungs and digestive system of only 30,000 in the U.S. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that primarily: clogs the lungs and leads to life-threatening lung infections & obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. There is no cure & the average life expectancy is mid-thirties but that’s not without significant struggles to stay in good health.

Each day, Bethany & Emily wake up at 6:30 a.m. to do a variety of breathing treatments for 20 minutes to shake up the thick mucus in their bodies, and then again for 20 minutes at night before they go to bed. In addition, they EACH take roughly 40 pills/breathing treatments for managing CF. Every time the girls eat any type of meal, they have to take 3-4 enzymes just to be able to digest their food & to ensure nutrient absorption in order to prevent malnutrition. Only 8-10% of the CF population (less than 3,000) have sinus complications, GI problems & liver complications. Bethany & Emily both experience ongoing chronic sinusitis & numerous surgeries to manage numerous nasal polyps. Emily has ongoing GI complications that affects her GI system & causes severe abdominal distentions & blockages. Her liver is also affected & is managed with ursodiol, which is bile duct acid that comes from a POLAR BEAR!

Much of their day is spent eating! They require 3,500 calories each day due to malabsorption, from the pancreas being plugged with mucus. They take a combined total of 85 pills/procedures daily. Currently, Bethany is fighting a lung infection, that has required yet another med - a15-day antibiotic of 3 tsp. twice daily. Emily is scheduled for nasal polyp surgery on January 24^th. All of her sinus cavities are filled with these growths. She’s hopeful it will improve her breathing. Bethany has had this surgery twice before & will need it again shortly as she is having severe headaches daily.

They are followed every 3 months at the CF center at SUNY Upstate (NY) for pulmonary complications, every 3 months at the Janet Weis Children’s Hospital (PA) for GI complications, and every 3 months at Wilson Hospital (NY) for sinus complications. They enjoy biking, sledding, Legos, rabbits & dogs. They both have high honors in school. They bring so much joy every day! We are thankful for the smiles on their faces despite all they go through & we are amazed at the many hearts they touch.

Do you have extra cans and bottles? You can donate them to the PBJ. Drop them off at the Redemption Center at 459 Chestnut Street in Oneonta. 607-433-9750. Tell them that they are for the PBJ Kids!