Daniela's Dream For A Cure

Daniela Ciriello is a vibrant, smart, brave, and courageous 5 year old.  She was not always that way though; she was constantly a fussy baby, colicy, and failed to thrive.  After trying many doctors, hospitals, and checking many things...it took a near death experience and one terrific doctor who listened and ran the appropriate tests to find an answer: at 14 months old she was diagnosed with a very rare genetic blood disorder, called Beta Thalassemia, or "Cooley's Anemia".  In short, her body does not produce enough healthy red blood cells.  The condition is life long, and can be fatal.  She requires blood transfusions every 3 weeks, along with numerous other doctor's visits, tests, check's, MRI's, vision and hearing tests every 6 months, and lots more.  As you might imagine, a life full of needles, struggling, and constantly being in the hospital is not easy.  It also takes a toll on the family's finances, as her medical bills add up fast.  She also takes numerous "specialty drugs" and prescriptions, that cost thousands each month.  Her most important one is Exjade, which is an oral Iron Chelation therapy, that is required to remove the toxic build up of iron in her system and organs, as a result of all the transfusions.  She has had surgery at just 2 years old to have a Port Catheter inserted into her chest and jugular to make the transfusion process easier, as her tiny veins were becoming so scarred and not working well.  She is also beginning to have some hearing loss, as a side-effect from her medications.  We appreciate the many, many people who have helped Daniela along her journey, and for those who take part in her care!  We are lucky to have her, and she is a light in so many people's lives, and has touched so many. God Bless and Thank you!