"Sometimes getting the wind knocked out of you is the only way to remind your lungs how much they like the taste of air." -Sarah Kay
Julia Marie was diagnosed with Cystic Fibrosis early on, at 4 months old. Her mom noticed she was coughing a lot and catching colds easily. At one point, Julia turned purple and she was rushed to a private doctor. Her mother was told "Your baby is dying. She's not breathing." A sweat test was performed and confirmed positive results for CF.
Julia's genetic mutations are ΔF508 and G542.
She recalls her elementary school nurse opening up her enzymes and mixing them with applesauce before lunch. During this time, despite being so young, Julia began to recognize differences between her and other kids.
When Julia isn't popping pills, taking inhalers, nebbing, or eating, she enjoys reading, writing, napping, watching TV, playing with her adorable dog, spending time with her family and baking! Right now, her health is one of her top priorities. Once she is able to, she will attend school to become a professional pastry chef.
Her motivation comes from knowing how delicate life truly is. She knows that if she fails to care for herself, her time is limited. She looks forward to marrying her fiance and watching her nieces, nephew, and cousins grow up.
For Julia, the hardest part of having CF is not knowing when your health will decline. It can happen over an extended amount of time, or rapidly. That fact alone scares her, but she perseveres despite her fears.
I asked Julia what advice would she give to someone who was recently diagnosed... she responded:
"Do your meds like you're supposed to. If you don't take care of yourself, then your body will just give up. It's up to you to fight CF. Don't let it win!"
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