Our Xtreme Hike Story
This is my second year participating in the VA Xtreme Hike. This event is so emotional and inspiring, and I am thrilled to be able to do it again in 2022. I wish I had the words to express how much this event impacted me. I feel so full of hope and know that Natalie has so much love and support from people she doesn't even know who are fighting for her and everyone with CF.
Your support is helping us get even closer to Natalie being eligible for a game-changing drug called Trikafta. This drug is a modulator. Modulators work by helping to fix defective CFTR protein, which is the closest we’ve currently got to fixing the root of the issues caused by Natalie’s mutations. There are a few other approved modulators, but Trikafta is the only one that Natalie is eligible to take based on her mutations. It’s approved for ages 6 and up now, and we expect that it will be approved this year for Natalie’s age group. This drug was made possible by the contributions from people like you. Words can’t express how grateful our family is for your support of our little girl.
Natalie is such a happy kid, and she brings so much joy to our family. We are so lucky that she’s a willing participant in her CF treatments. Lots of people have asked what living with CF looks like for Natalie, so read on:
Natalie’s Typical Day
7:00 am: Wake up time! Natalie takes her daily dose of Nexium and completes 21 minutes of airway clearance therapy, which includes wearing her vibrating vest and inhaling Albuterol and Pulmozyme (a nebulized drug to thin her sticky mucus).
7:30 am: Time to eat! Good nutrition is so important for people with CF. Natalie eats a high-fat, high-protein, high-calorie diet because a healthy weight correlates to better lung function. Before every meal and snack, Natalie takes 56,000 units of Pertzye, a pancreatic enzyme to help her body digest food and absorb important nutrients. We also sneak in a daily probiotic and a vitamin specially formulated for CF kids.
8:15 am: It’s time to leave for school. Natalie is autistic, so each day she works incredibly hard with her awesome therapists from 9:00 am - 3:00 pm. Natalie and her team work on play skills, everyday living skills, verbal communication and loads of other important lessons so she can realize her full potential. While she’s at school, she completes another airway clearance treatment with her vest. In addition to ABA therapy, she also receives speech and occupational therapy. Natalie loves school, and she has made so much progress in the last year! We can’t stop her from talking now!
4:00 pm: Natalie is home from school and loves to play with her toys. If she’s feeling a little under the weather, we’ll do an airway clearance treatment with her vest around this time to clear her mucus and make breathing a little easier.
5:00 pm: Time for dinner. Mac and cheese? Grilled cheese? Pasta? Chicken nuggets? Natalie gets to eat whatever she wants to ensure she’s meeting her daily dietary requirements… and she always reminds us to get her enzymes first!
7:00 pm: Time for one more airway clearance treatment before bed. Natalie ends her day the same way it started, with 21 minutes on her vest while she reads books or plays Roblox with Dad and Felicia.
8:00 pm: Lights out! Natalie and lots of kids with CF get tired more easily than others because their bodies are working hard to breathe and digest. She sleeps through the night until it’s time for another day!