Organized by: Glenn O'neill
Saving Eliza - The 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. Eliza Today and Her Future Right now Eliza is a fun loving 4-year-old who loves to sing, run and MOST of all, cuddle. She loves to play dress up and horse around with her rowdy big brother Beckham. She is, however, beginning to show signs of the disease in her learning and attention. And if nothing changes, it will only get worse from here. By age 6, most children with her disease have irreversible brain damage and lose the ability to speak. As the disease continues to tear through her brain and body, she will lose the ability to walk and eventually she won't even be able to feed herself as seizures ravage her body. These devastating changes are a 100% certainty if she doesn't get treated, and soon. It is a parent's worst nightmare, and an unfair sentence for any innocent child.
But there is hope! Researchers at Nationwide Children's Hospital have discovered a breakthrough gene therapy treatment that can stop this disease. This treatment could save Eliza and literally stop this disease in its tracks overnight! The research conducted points to this clinical trial being the answer to stopping this disease, which means the only thing standing between Eliza and her miracle, is money. The trial is lacking funding to make the medicine, administer the treatment, and remain on schedule, and every moment counts as Eliza approaches the tipping point when her disease will take an irreversible turn for the worst. She and many others like her are counting on you to donate to the cause or share this story so that they can have a chance to leave their mark in this world: The clock is ticking.