Let me start by introducing you to the 2 reasons we walk to fundraise for a cure for Cystic Fibrosis.
1. Sienna Tegan. She has a sparkle in her eye and an awareness of the world that seems far beyond her age. She is this amazing joy who has made us happier than we thought possiible. Since she was little, Sienna has had a passion for life. Everything she does is full of emotion and heart. She loves art, fashion, animals (stuffed or real), make believe, and helping others. She can't decide if she wants to be a doctor or a fashion designer. She dreams big dreams for herself and we do too. She's like every other 8 year old in most ways, except one. Sienna was diagnosed with Cystic Fibrosis at 6 days old. Since that time she has spent 1500 hours doing vest and respiratory treatments. She takes 185 pills a week when she's healthy. At the age of 8, she has been through 2 surgeries and 3 hospitializations. She has a feeding tube that helps her get the extra fat and calories her body can't abosrb on its own. She misses out on special events, holidays and other social gatherings because of the risk of illness. While most kids her age are out playing, Sienna is inside doing her respiratory treatments, having extra meals and snacks and sitting patiently while we tube feed her milk. She dreams of a day when she will no longer need to do her treatmants and take pills. I tell her everyday, that day is coming!
2. Cameron Easton. Our beautiful and busy 3 year old who never stops moving! His laugh and sense of adventure make us smile everyday and fill us with an unimaginable love. Even at age 3, he lives his life with so much energy and persistance that I can't imagine anything in life will hold him down. Cameron is always on the go. He is a busy climber and adventure seeker who loves to be social with other kids and the outisde world. When he was just 10 months, he began his vest treatments and sits patiently on our laps for over 200 hours a month through the whole process. He has taken pancreatic enzymes since he was 8 days old. I look at his beautiful face and know that with all the support and research, there is a real possibiity that he will see a cure in his life.
Although we have our 2 reasons for walking, there are other reasons too. There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day just to breathe. We walk for our own kids and for them too. I hope you will support us in our efforts.
Real progress has been for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. By walking today, we are helping add tomorrows to the lives of Cameron, Sienna and all people living with cystic fibrosis. Will you join us? Please consider making a donation to our Great Strides fundraising campaign today!
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.