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.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.