We found out that Ellis could have cystic fibrosis when they detected two gene mutations through a newborn screening. The newborn screening has only been around in Arizona for the past few years, and it was a very important part of detecting the CF early and starting treatments immediately.
Each newborn is screened with a blood spot screening that can detect 28 different disorders, one of which is cystic fibrosis. Approximately 300 newborns each year in Arizona have an inherited disorder that could be identified through screening. Newborn screening helps to identify those healthy looking babies before they develop the symptoms of the disorders, such as organ damage, developmental delay, etc. Doctors can then provide follow-up services to save lives and improve quality of life.
We are blessed to have these services provided to all children, and our family is grateful that we were able to start addressing Ellis' CF within the first few weeks of her life. This test is a game-changer.
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.
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