Today we are sharing Rylee Henderson’s story! Check out our blog to learn more about this very brave little girl!
Rylee is 18 months old. She lives in La Grange, KY with her mom, dad, and three siblings; Wyatt is seven, Haylee is five, and Garrett is three. Their family also has a cat named Casy and dog named Roland. Rylee loves her family very much!
One of her favorite things to do at the moment is to try and find the tallest thing in the house and climb to the top of it. So far Rylee’s achieved climbing on the couch, the kitchen table, and the best one yet was climbing up the ladder to her sister’s top bunk bed! Another one of Rylee’s favorite things to do is race with her brother, Garrett. They stand at the door and he says, “Ready, set, go!” and they race super fast to the couch. They laugh and laugh as they’re running. Rylee and her older brother Wyatt, just started bonding. He really didn’t want to have anything to do with her at first but he’s really warmed up to her! He thinks it’s really funny when he sticks his tongue out at her and she does it back. Rylee also has the most amazing sister around. Haylee and Rylee enjoy so many things together. Haylee feeds her yummy candy, dresses her in cute outfits, and sneaks make-up on her while mom and dad are busy chasing the other kids around.
The day Rylee was born, nurses pricked her heel and caught tiny droplets of blood on a piece of paper. This paper was sent off to a lab. The results were then sent to her pediatrician’s office. When she was less than ten days they received a call that she possibly had Cystic Fibrosis. At the time her parents had zero knowledge about CF. They never knew they were both carriers. Rylee’s mom actually has two CF mutations that are on the same allele and her dad has one mutation. After confirming with a sweat chloride test (gold standard in diagnosing CF) the pulmonology team met with Rylee and her parents when she was ten days old.
When Rylee was four months old her pulmonology team informed her parents about a drug study for children that carry certain mutations that was happening in Indianapolis. She was able to enroll in the medical study and started taking Kalydeco (Ivacaftor) at five months old. At the time this medication was approved for children in the US to start taking at age one, if they had certain CF mutations. It’s now has been approved for children starting at the age of six months old. Since taking Kalydeco she had another sweat chloride test done and her number is almost as low as someone that doesn’t have CF.
Each day she has routines in place to keep her healthy. She starts with a yummy breakfast. Her mom and dad make sure at least one of the foods she eats contains fat (avocado, whole milk, toast with butter or peanut butter, yogurt, cheese, egg). She really loves to eat so she has no problem eating whatever is placed in-front of her. She was born pancreatic sufficient so she doesn’t need to take enzymes at this time. After finishing breakfast, Rylee’s mom or dad place her Kalydeco and AquaDEKs (liquid vitamins) in a small bowl with a little smoothie (usually orange juice, spinach, yogurt, berries, mango and pineapple blended). She has the same routine at night but they leave out the AquaDEKs. After breakfast she does her airway clearance for twenty minutes. She wears a small vest that is attached to two hoses and a machine. The vest rapidly inflates and deflates to jolt mucus loose in her lungs so she can cough it out. She enjoys doing her vest most days because she gets to read books and sit with mom and dad. Honestly Rylee is looking forward to the day when she can move freely while wearing her vest. She’s still too little to wear one of those vests. She has to be about fifteen years old.
The Kalydeco she takes along with her daily regimen has helped keep Rylee healthy so far and given her a very bright outlook for the future.
“I hope one day a cure is found!”
At Cure CF we do what we do for little ones like Rylee. Your donation, support, and contribution goes directly to find a cure for CF and make Rylee’s hope come true.
Keep up with Rylee and her family HERE
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