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.
Today I’m sharing a more personal story about our family – the story of my 5 year old niece, Layla. She is the bravest, most joyful little girl I know!
Layla has Cystic Fibrosis. But, you would never in a million years know it just by being around her. And that’s because you can’t see CF! She has an incredible story, and certainly one that should be shared. Her laughter is infectious, and her disease is only a small part of her giant personality. To better tell her story, I’ve teamed up with Walgreens as part of their Cystic Fibrosis CF Champions program, “Navigating the Journey, Together.” Through this program, we’re spreading awareness of CF, and the importance of regular medication adherence for living life with this disease. Cystic Fibrosis Awareness Month is in May, but all summer long we’re aiming to share the love.
Layla’s mama, Joanna (my sister-in-law), is super-mom. She is not only a full time working mom to Layla and her big brother, Rhett, but she’s also a full time advocate for CF, fighting day and night to #cureCF. Ever since Layla was in utero and they discovered that she had in fact inherited the CF gene, Joanna has been on a mission to find joy in every aspect of life, and raise Layla to do the same. The amount of faith and strength that Joanna has is incredible, and there’s no doubt that God is doing BIG things through both she, and Layla Jean.
I thought it would be fun to “interview” Joanna about all things Cystic Fibrosis, so that you guys could get a better picture of what life is really like for a small child with CF. CF can look different on every patient, so it’s not necessarily a one-size-fits-all disease. Layla is also a bit of a rare bird in that she was diagnosed with CF before she was born – something that often doesn’t happen until children are quite a bit older. The second she was born, Layla was surrounded by some of the best doctors and nurses in the country who specialize in pulmonary diseases. Because of such wonderful care, advances in medicine, and lots of prayer, Layla is thriving and doing great!
Let’s get to our interview:
What is CF?
From the Cystic Fibrosis Foundation website…”Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.”
What “gene mutation” of CF does Layla have?
Double Delta F508
What types of medications and treatments did she need when she was an infant?
Since day 1 Layla has been taking pancreatic enzymes to help her digest her food…we went from emptying the contents of 1 pill onto a spoonful of applesauce to my little champ popping 4 pills at one time! We also did CPT (chest percussion therapy aka “pats”) twice a day which is basically pounding on her chest and back to loosen up the thick, sticky mucus that builds up in a CF patients lungs.
Now that she’s older – have her treatments changed? In what way?
We’ve increased her pancreatic enzymes since she is eating more food, of course! The biggest change is that her CPT is not done with hand percussion but with a percussion vest!! PRAISE GOD!! We do the vest twice a day for 20 min sessions. Along with her CPT Vest, Layla does breathing treatments while she is doing the vest. The first treatment is albuterol to open her airways and the second is pulmozyme, which is used to increase the lung function in CF patients.
Thankfully Layla has kept pretty healthy and has only had a few lung infections that have resulted in stronger meds and more frequent breathing treatments with strong medication. She has also only had two hospital stays in her 5 years. The first was a stay in the NICU when she was born as she had meconium ileus (basically her poop was so thick and sticky it was stuck in her intestinal track.) I have never prayed so hard for poop in my life! The second was just this past October where we had an extended stay at Cook Children’s in Fort Worth (LOVE Cooks!) for 11 days to fight a bacterial infection that had her feeling lethargic and left her with some major difficulties in her breathing. After some serious meds Layla was back to her peppy self and we busted out 😉 side note we spent Halloween at Cooks and Layla was the cutest monarch butterfly flitting around her room.
How does she do with her shake vest?
She loves it and during her night treatment it pretty much shakes her to sleep after singing with a shaky, funny voice for a little while.
What do you wish more people knew about CF?
That we are so close to a cure and the likelihood of a cure in her precious lifetime is incredible to think about. The more people know about CF and support the Cystic Fibrosis Foundation the closer we will get.
What are Layla’s most common symptoms? Or, how is she affected by CF on a daily basis?
Most common for her is a cough to help bring up that thick, sticky mucus. Think of a time you had a really bad cold and multiply that by 10 and you’ve got her cough. Poor little one, sometimes she coughs so hard she vomits. But, I’ll tell you that sweet, strong Layla Jean takes it all in stride and rolls with every punch.
Do you have any funny stories about Layla’s CF?
YES!! Girlfriend has a hard time keeping her weight up because of her digestive issues so she is encouraged to eat a high calorie diet. In my dreams. Lots of yogurt, ice cream, avocados, pretty much all things dairy. Unfortunately she is the child who, at Chick Fil A, asks for a side salad with her nuggets?! And who prefers organic juice pops to a creamsicle?? Who is this child? At least she LOVES avocado!
How can we follow Layla’s journey?
I would give anything to take CF away from her but I cannot. But my little fighter, Layla, is the sweetest, toughest, most joy filled little gals I know. God blesses us constantly with an incredible team of Doctors, Nurses, Dietitians, Respiratory Therapists, Child Life Specialists, friends and family who are constantly praying for a cure but who are also praying that we find JOY in every day, every treatment, every moment.
A photo posted by Sarah Ingle (@sarah_ingle1) on
Because CF affects a person’s ability to breathe deeply, take a moment today to take a deep breathe yourself, and be thankful for a clean and clear airway. Be sure to check out the Walgreens CF Champions homepage, and read about other CF journeys. You can also check out Rock CF to purchase your own coffee mug or t-shirt to spread CF awareness to everyone around you!
We love you Layla Jean!
Have you heard of CF? Do you have any experience with CF? How do you choose joy?