Eliza O’Neill Story
"Last July, our 4-year-old daughter Eliza was diagnosed with a rare terminal genetic disease called Sanfilippo Syndrome-Type A. In one terrifying instant, we were told that we would have to watch her fade away before our eyes.
"Eliza and other children with this disease are missing an essential enzyme for normal cellular function. Over time, a toxic material called heparan sulfate builds up in their brain and body leading to severe disability and death before they even reach their teens. This disease affects both genders, all races, all countries and continents. It is everywhere and the world needs to know."
There is a gene therapy trial scheduled for late 2014 but unfortunately it is lacking funding which means the trial will be delayed. Eliza will start to experience symptoms soon so time is of the essence for the trial to happen asap. Please go here to donate and help fund a cure for Eliza and other children who have this horrible disease.
I can't even imagine what this family is going through right now. Eliza, this precious little girl is happy, care free, and playful now but the future will be stark for this cute, precious little one if the funding needed for the cure doesn't come in time for Eliza. I will be remembering Eliza and her family in my prayers. Praying for a miracle - that a cure is found in time to save Eliza.