As Ella was officially diagnosed with Cystic Fibrosis at 4 months old, it has taken us quite a while to figure out "how to feel", "how to react", "what this diagnosis means", and how we can support Ella through this. She is such a STRONG and HAPPY girl, and brings light to all she meets. We have gone through amazing highs watching her grow over the last year and have also experienced extreme lows, digesting this news, but have been extremely thankful to those around us... supporting us. Near and far! We thank you for your love. It has been hard for us to verbalize our needs and support, but we are very hopeful for the future and the current medication that Ella takes has made a huge positive impact on her health. She is THRIVING. From being in the negative percentages on the growth chart as an infant, she is now 87th percentile and growing stronger every day! She is AMAZING, and we thank you all for your ongoing support. We often feel like there is nothing we can do when it comes to her diagnosis, and those feelings of helplessness are tough to manage. However, maintaining a positive attitude and happy environment is extremely important, so we do what we need to do to make sure she is LOVED at all times. Which is so easy to do. Ella is a true gift, a joy to be around, and its our job to ensure that we advocate for her. And Landon LOVES her too!! Bonus! So, in order to put a positive spin as to how we can support baby girl, we have decided to join the CF Foundation and walk at the Great Strides event next year to fund raise for a cure to Cystic Fibrosis!!! Hoping that you can join!! Or be there with us in spirit for those far far away
For too long, cystic fibrosis, a rare, genetic disease, has robbed people of tomorrows – progressively limiting their ability to breathe and tragically shortening life. There are approximately 30,000 Americans living with CF. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
I walk for them. Will you join me and support my Great Strides fundraising goal?
Real progress has been made 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 with me in Great Strides, you can help accelerate the Foundation’s pursuit of new therapies and provide vital support to meet the needs of the CF community.
Please support me!
Your participation will help us get one step closer to ending this terrible disease. Let’s make CF 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.