Thank you for joining our family in our fight against Cystic Fibrosis! We are so grateful to have so many come together to help us bring more tomorrows for Ella Kate! Your friendship and firm commitment has been indescribable through this journey.
Since our last Great Strides, Ella Kate has had lots of changes! She became the best big sister to her new baby brother, learned all of the words to her favorite song, Jesus Loves Me, turned three, and has memorized all of her CF medications (so proud)! Her favorite things to do are singing and dancing, loving on her baby dolls, reading to and "petting" her brother, taking her "mingo" everywhere, jumping on the trampoline during her vest CPT, watching "pink princess" and the incredibles, and wrestling with her daddy!
In her CF world, she has upgraded from manual chest percussion therapy to vest CPT, increased her amount of enzymes per day, and is soon to be starting a new CF drug called Orkambi, thanks to YOUR donations to research!
Although, we have come so far, we are reminded by her pulmonology team that CF is still constantly impacting her body. Just because she doesn't display more direct symptoms doesn't mean that CF isn't making it's mark on her. She is constantly fighting for breath and the ability to fight off thick, sticky mucous throughout her body. Doing this comes at a high sacrifice:
-Enzymes: 31 pills per day- 961 pills per month. She needs these to gain weight, digest her food, and absorb her vitamins and minerals.
-Vest chest percussion therapy: two, thirty minute sessions per day.
-Breathing treatment: two, 15 minute sessions of sodium chloride/ one, 15 minute session of pulmozyme. These help break down the thick mucous in her lungs.
-Prescription level vitamins: one pill, one liquid dose per day.
We are SO thankful for all of the knowledge, medications, and equipment that come from YOUR donations to the Cystic Fibrosis Foundation! Without it, Ella Kate wouldn't have these necessities to live the healthiest life she can!
Thank you for the constant prayers, hugs and words of encouragement for our family, and especially, Ella Kate. Your support and fundraising/donations are giving us everything our family needs-more time for love and memories with our baby girl.
Let's meet our dream to make CF stand for Cure Found!
Ways to help:
To walk with us at the event: Click on the "join our team" button and select "walker." From there you can make a donation and/or start your fundraising. Joining Ella Kate's Fight is free and does not require a donation or fundraising, however, fundraising IS encouraged! The more resources for research, the farther we are apt to improve CF care!
Can't attend the walk but still want to support and donate: Click on "Join My Team" button and select "virtual walker." You cyber fundraisers are our online force who can drive donations in your community! Once you register, you then will be a given a link you can share with friends and family.
Help share Ella Kate's story: Telling EK's story is HUGE in educating others that a cure is needed and so helpful when a face is put with a cause. For ALL walkers and virtual walkers who gather donations from friends, co-workers and family in the amount of $100 or more, you will receive a free Great Strides t-shirt! **We are hoping to also be offering new and improved Ella Kate's Fight t-shirts this year, so stay tuned for those!
To Donate: Click on any team members name and your donation will go towards their goal. We are so so so grateful for your donation and passion for furthering research for our EK!
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.