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.
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.