WELCOME to TEAM SISTERS!
Update on the inspiration and the stars of TEAM SISTERS:
The girls are doing amazing! Aria is 11 years old now and still full of sass and beauty. She is in 5th grade and loves science. She loves to dance- her favorite dance style is jazz and contemporary. She is so strong and brave and isn't afraid to try new and scary things. She loves WATCHING blood draws but hates getting shots. Her favorite food is sushi and ferrero rocher chocolates.
Isabelle is 17 years old and gorgeous, so funny and sarcastic and has the best laugh. She is a high school junior and her favorite classes are biotech and photo. She is on pomline and LOVES cheering on her school. Her team is going to Nationals in Orlando in March and they are all so excited! She loves to dance with her favorite styles being ballroom and ballet. Her favorite foods are bread (lol!) and mac and cheese and she loves dancing!
Sounds pretty normal, right? We try to keep things as normal as we can but...they both have cystic fibrosis. What is cystic fibrosis? Technically speaking it is a genetic life-shortening disease that affects the lungs and pancreas and causes mucus to be thick and sticky causing persistent lung infections and limits the ability to breathe. But according to my kids...CF just sucks. So while we see healthy, active girls on the outside, their bodies are fighting to BREATHE every minute of everyday.
What you don't always see is...
-the pills they take everyday to stay healthy (over 3,600 in 1 year)
-the breathing treatments they do twice a day (2,800 breathing meds in 1 year and that is when they are healthy!)
-the 20 minutes they spend twice a day strapped to a vest that shakes and squeezes the mucus out of their lungs (28,800 minutes in 1 year)
-the clinic and doctors appointments they go to every 3 months for 3 hours at a time
-the blood draws, xrays, ecgs, throat swabs and pfts yearly and sometimes monthly
-the salty, high fat foods they have to eat to keep weight on and not get dehydrated
-the fear of catching a cold, a cough that goes on too long, being around another person with cf
It is a lot but these girls are rockstars. Is it all sunshine and rainbows...No! There are tears (especially when there is a throat swab involved), there is complaining (why they can't go in a jacuzzi with their friends), there are fears but we all work through it the best we can.
One amazing thing about the CF Community is HOPE. Both girls are 2 of the 25,497 people with cystic fibrosis eligible for a modulator that is changing lives. In 2021, both girls were on Trikafta (Isabelle through the clinical trial and Aria started in October 2021) along with 19,263 others.
There are over 2,000 cf mutations so having a medication that can help over 85% of the population is crazy amazing! The girl's mutations are in the 3.3% percentage with 1,048 people having the same mutations.
BUT with the HOPE and the new medications coming out, people with cystic fibrosis have a different problem and it is a GOOD one--growing old! College, marriage, families, gray hairs, grandkids! There are more cf adults than cf kids right now (62%!). The future is coming for them and it is because of the support of our Team Sister family!
This could not have happened without YOU! All the fundraising, volunteering, support, hugs, and love that you sent to our family and the CF Foundation have been so appreciated and have helped the CF community so much. YOU have helped!
Please check out our YouTube video for 2021: https://www.youtube.com/watch?v=_pMp_mjNM3Q&t=8s
Please consider joining Team Sisters this year! We will be selling amazing Team Sister shirts!!
1. Buy a Team Sisters t-shirt here: TBA
Stay in touch here!
Connect With Us
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
FOR YOUR SAFETY AND THE SAFETY OF OTHERS: