Hello Team Ellis Rose!
It has been way to long since I have updated Ellis' blog, and today could not be a better day to share with you how our Ellis is doing.
Today, Ellis is one year old! How time flies...
Looking back on this year, we have gone through so much with our daughter, and we would not change it for anything. Ellis has made our hearts so full with love and joy. She has opened the door to a CF community that is truly giving and has taken in our family with open arms. Ellis is pure love. Does it get any better than that?!
A year ago today, Ellis entered this world at 2:46PM at 6lbs 7ounces and 19 inches. She was perfect (and still is!). One week later, we found out Ellis had cystic fibrosis. At first, we were devastated. After letting the news set in, we were ready to educate ourselves and take on this fight. Little did we know how much cystic fibrosis would change our lives for the good. We have met so many wonderful people and have become extremely involved with the amazing foundation.
Now, a year later, Ellis received a great birthday gift from Vertex. This past week, they submitted a New Drug Application for VX-770, now named Kalydeco, to the FDA with hopes that it will be approved in six months! I never thought it would feel so amazing to have a name for this life changing drug, Kalydeco. This is a name that will change what it means to live with CF, and I am so excited to see what the future holds for Ellis!
I want to thank all of our family and friends for their endless support and love during this first year. Ellis continues to stay healthy and is on track for weight and height. We have so much to be thankful for and could not be more blessed to have such an amazing daughter!
Happy happy birthday sweet Ellis Rose!!!
