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
Hello 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!
XOXO
Kristina, Levi and Ellis Rose
Thursday, January 12, 2012
Tuesday, January 10, 2012
Join Team Ellis Rose
This year we will be walking for a cure at Great Strides on March 24th at the U of A Mall. Please join our team in helping raise funds to support research for cystic fibrosis!
Visit my home page and click "Join My Team":
http://www.cff.org/Great_Strides/KristinaQuesada
Also, we will have team shirts again! If you would like one, please let me know and what size you would like. They are $10 each.
Thank you all for your continued support, and I look forward to seeing everyone at the walk!
Visit my home page and click "Join My Team":
http://www.cff.org/Great_Strides/KristinaQuesada
Also, we will have team shirts again! If you would like one, please let me know and what size you would like. They are $10 each.
Thank you all for your continued support, and I look forward to seeing everyone at the walk!
Wednesday, November 2, 2011
Tuesday, October 25, 2011
Ellis is ONE!
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!!!
Monday, June 27, 2011
Ellis and Her Pounds
Before I started Ellis' pounds the other day, she got a hold of them and had some fun. Gotta love her!
Untitled from Kristina Quesada on Vimeo.
Tuesday, June 7, 2011
Baby Gender Reveal Cake...1 Year Ago
June of last year, we found out Ellis was going to be joining our family. The video is a little long, but it is such a great moment...I had to share.
Untitled from Kristina Quesada on Vimeo.
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