It is hard to believe that we heard the words "your daughter has Cystic Fibrosis" more than 12 years ago already. She was so little (15 pounds at 15 months old) and now she is full of life. She is 13 years old and in the 8th grade at Kenowa Hills Middle School. She loves hanging with her friends, cheerleading, and lacrosse.
Our journey began with questioning all her "symptoms" thinking that she might have some sort of food allergy. A constant cough, an enormous appetite and more than a dozen diaper changes each day all were signs that something was not right. When Erin was born, there was not the newborn screen that is done on all babies born today. She missed this important test by only a few short months and is why she wasn't diagnosed until 15 months old.
Now, with the significant advances in the treatment of those with Cystic Fibrosis, Erin has access to precious treatments and medications that help her live a "normal" life. Every day she takes over 20 pills and spends about 2 hours doing breathing treatments and chest physiotherapy. Our lives are very busy and it is not always easy for her to understand that sometimes what she wants to do has to take a back seat to what she has to do to stay healthy.
As she is now almost done with middle school, we can't help but think how lucky we are. Only a few of decades ago, children born with Cystic Fibrosis were not even expected to live to begin kindergarten. While next year she will embark on a new journey, with new challenges, we know her fight is not over yet. Cystic Fibrosis is a progressive disease, and without a cure, her health will continue to change. Today, children born with Cystic Fibrosis have an average life expectance of 42 years. We are so thankful for all the advancements being made which is why we fight and will continue to fight and will continue to until there is a cure for everyone with Cystic Fibrosis.
This year we are once again participating in the Great Strides Walk at Millennium Park on May 17, 2020. This is the Cystic Fibrosis Foundation's largest and most successful national fundraising event. We would love to have your support in helping Erin's Angels meet their fundraising goal this year. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investments in vital CF programs to support research, care and education.
Everyday precious lives are lost to this devastating disease, any amount you can donate is greatly appreciate and will add tomorrows to those suffering from Cystic Fibrosis.
Together we can make a difference in the lives of Erin and all those with CF. One day CF WILL stand for CURE FOUND!
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.