It is every parent's worst nightmare — being told your child has a deadly disease and there is nothing the doctors can do. That nightmare became a reality for Cara and Glenn O'Neill, when they were told their daughter Eliza had developed Sanfilippo syndrome, a neurological disease that destroys brain cells and kills children at a young age. The couple turned to the Internet to see if their 4-year-old had a chance of surviving the disease, which starts affecting children at the age of 5. What they found was a gene therapy that had been successful for mice and was $2.5 million short of beginning a clinical trial.
Due to the rarity of the disease, drug companies were not willing to offer the researchers financial support. But the O'Neills would not give up. With the help of Canadian filmmaker Benjamin Von Wong, the couple created a video in hopes of raising enough money to launch the trial. Thanks to the video, the family have managed to raise $380,000 in six months through their fundraising site, SavingEliza.com. Both Cara and Glenn realize they are far from their goal and even if they reach it, that does not guarantee Eliza will receive the treatment. These adversities, however, will not keep them from fighting for their daughter's life.
"As a parent, you have to be the advocate for your child," Cara tells Today.com. "You have to give them the best shot possible. And this is her best shot."