On November 1, 2010, our daughter, Ellis Rose, was diagnosed with Cystic Fibrosis at 7 days old. Our family is now committed to finding a cure for this illness that 70,000 people around the world suffer from. The first words our doctor said to us during our first visit to the CF Clinic were "We are very hopeful for Ellis". Hope is a word we hear a lot in the CF community, and it is the best way to sum up how we feel as we continue our fight against CF.
Monday, February 4, 2013
Hellloooooo Team Ellis Rose!
It has been a year since I have blogged with Ellis updates, and I have decided to bring this bad boy back, since I am sure it will be a year of progress and great news in our fight against CF.
2012 has come and gone, and we had an a great year as a family. Ellis is now a happy two year old who has grown to be independent, strong, smart and pure joy. It has been amazing to watch her grow into the little person she is becoming.
We have been lucky with her health, a cold here and there, but nothing bringing up concerns with her CF. We are still waiting on the infant trial for Kalydeco. We have been in contact with the Denver Children's Hospital (one of the sites involved in the trial), and they are aware they we want to be involved. They expect to start the trial in the next month or two. I cannot even imagine the possibilities for Ellis and what CF will be for her with this drug in her system. I truly believe it will be a game changer.
We continue to stay extremely involved with the Cystic Fibrosis Foundation. Last year, Levi held a golf tournament with his good friend, Chris, which was a great success! I chaired the Breath of Life Gala, and we raised a record breaking $160,000 for the Foundation!
I hope you all can join our team for the annual Great Strides walk on April 14th at the UA Mall to raise awareness and funds for CF. You can register at www.cff.org/Great_Strides/KristinaQuesada or click the Great Strides button in the left column.
Here is to a great year! Thank you all for your continued support!
Kristina, Levi and Ellis Rose