Love for Layla
Layla Russo Casarez
Layla Russo Casarez
Layla Marie
Born October 24th, 2018 in Omaha Nebraska!The cutest little baby with a head full of dark brown hair!
We learned Layla had Cystic Fibrosis after a newborn screening detected it. Unknown of what it was, and Google searching it had my heart broken and shattered into a million pieces. I can still to this day sit back and remember the day in almost every detail of the appointment and the testing. Our lives changed that day and we live our life cherishing every moment that we have. As my husbands tattoo says Tomorrow is promised to no one. The diagnosis hit hard and we basically put ourselves in a bubble when she was a baby. Determined to keep her as healthy as we could. Slowly as my oldest sons love for baseball grew I knew we couldn't stay in a bubble. We gradually started allowing Layla to interact with other children who were well. Still the thought of getting sick scares me, I've learned that she needs to be able to grow, learn and live a life ( that will be different from others) but full of greatness, success and to fight through adversity.
Since Layla has been born she's had 2 hospital admissions.
Her first admission lasted 17 days.
Her second admission was roughly 5 days.
Both were due to viruses.
-Layla currently does breathing and airway clearance treatments 2 times a day, unless fighting a virus then we do 4.
-She takes enzymes to help her body absorb fat and protein . ( Pancreatic insufficient)
-We are on the new medication Trikafta. However we can't take the full dose due to it affecting her liver.
-Many other medications and vitamins are taken to help her stay healthy.
- Layla does night feedings through her G-Tube to take in extra calories, fat, and protein. To keep her BMI above the 50 percentile. ( Lower risks of lung infections above 50 percentile).
Although we have our moments and Layla struggles with treatments and some medicine from time to time, she definitely doesn't allow CF to effect her. She currently loves everything about wrestling. She does homeschool. Loves being outside. She's your typical 6 year old. Attitude and all! We do out best to keep her as healthy as possible without trying to keep her from experiencing life!
A little about CF below šš¼
There is currently no cure for cystic fibrosis and too many people with CF die young. Iām walking to help change that reality.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward ā a cure for everyone with CF.
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