It has been a couple years since we last participated in Great Strides. But we are BACK...and it will be better than ever, especially with YOUR help!
Update on the inspiration and the stars of TEAM SISTERS:
The girls are doing amazing! Aria is 9 years old and full of spunk, sass and has the cutest smile and dimples. She is in 4th grade and loves her teacher and learning math, reading and science. She is dancing all the time at Tucson Dance Academy and doing gymnastics at Old Pueblo Gymnastics. She is so strong and brave and isn't afraid to try new and scary things (like doing a back tuck!). She loves to be creative, loves mac and cheese and ferrero rocher chocolates. Isabelle is 15 years old and gorgeous, so funny and sarcastic and has the best laugh. She is in HIGH SCHOOL as a freshman and loves the campus and freedom that high school offers. Her favorite classes are theater and english. She is on pomline and LOVES cheering on her school. She is dancing at Tucson Dace Academy, doing ballroom at Monarch Ballroom and gymnastics at Old Pueblo Gymnastics. She loves to move, perform and express herself through dancing. She is an inspiration and full of grace and loves laughing so much that we are all crying. Her favorite foods are bread (lol!) and mac and cheese and she loves playing minecraft!
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 compaining (why they can't go in a jacuzzi with their friends), there are fears but we all work through it the best we can.
There has been a lot of HOPE the last couple of years in the CF world. Trikafta came out and changed the lives of so many people. Trikafta is three different medicines (one being kalydeco that the girls have been on for years) and it targets the CFTR protein defects in the cells. The meds all work together to keep the proteins open longer and more proteins can reach the cell surface. This medicine is a life changer.
In October 2019, Isabelle was one of 250 people in the US and one of the youngest participatants to be invited to take part in a clinical trial. She took her first dose of Trikafta on January 29th, 2020 and it was 10 days of the "purge". My girls have always been pretty healthy and do not cough up mucus unless they are sick. But this was so different...she was purging mucus for 10 days straight from every little part of her lungs. She was exhausted, had a rash, did not sleep well but on the 11 day that all changed. She had so much energy, the coughing and the "purge" stopped, and she said she could BREATHE so much deeper. It has been 15 months since her first dose:
-1,536 trikafta pills
-25 clinicial trial appointments that are 4 hours long each
-25 blood draws (about 140 vials of blood)
-18 sweat tests
-25 pregnancy tests
-5 COVID tests
and she has not been sick (except for 3 days with COVID). She is so much more active. She has gained 20 pounds and is now 5'5. She feels great!
There is HOPE in the CF Community with this medicine. This medicine will help 90% (about 27,000 people of the 30,000 in the US) of the cf population that are 12 and up right now. Trikafta was recently approved for 12 and under!!! And Aria will be starting her journey.
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 consider joining Team Sisters this year! The walk may be virtual, it may be in person but if you know me at all, you know that I am already thinking of some fun fundraising events!! Stay in touch here!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.