After the internet saved Eliza O'Neill's life, her grateful parents, Cara and Glenn, are using it to try and help other children who are still suffering.
Three years ago, Eliza was first diagnosed with Sanfilippo syndrome at just 3 years old. This rare disease has been described as "childhood Alzheimer's," and it is estimated that one in 70,000 newborns is diagnosed at birth. Because it's degenerative, those with it will eventually lose the ability to walk or talk while also, most likely, suffering from seizures and joint stiffness.
These distraught parents also knew the sobering truth that the majority of children who suffer from this syndrome do not live past their teen years. However, her parents were determined to find a different outcome for their little girl and decided to get creative with their plea for help: they enlisted the help of a photographer to create an emotional video telling Eliza's story.
This heart-wrenching video went viral online, and the family's Cure Sanfilippo Foundation has since raised more than $3 million to fund new research. While Eliza has since lost the ability to speak, she has become the first child in the world to be treated with a new gene therapy clinical trial. In order to qualify for this potentially life-saving treatment, Cara and Glenn, as well as Eliza and her brother, Beckham, decided to isolate their family to protect Eliza from catching a serious virus. What they thought would be 100 days of isolation turned into a startling 726 days, but since receiving the treatment, her parents are hopeful for Eliza's future.
"The quiet moments at night when I read her a book or sing her a song, she smiles and looks deep into my eyes," Glenn told the Huffington Post. "I believe she is understanding. These small moments give us hope. We used to take these things for granted, but not anymore."
Eliza's family also emphasizes that they raised money for the gene therapy without knowing if Eliza would be included in the clinical trial. "We knew if we didn't help get the trial up and running, and fast, she would have no chance because the disease is rapidly degenerative," Glenn said. "We chose to tell our very personal 'Saving Eliza' story for the greater cause for all children."
After the impact of their first video, the family has now shared Eliza's "miracle" story in an attempt to spread the message that if they don't manage to raise more money for research — fast — all of the other children who weren't selected for the trial will continue to degenerate before dying. "That is the reality," Glenn said. "It is agony on parents. These kids are on a timeline, and there is life-saving urgency."
Whether they have been impacted by Sanfilippo syndrome or not, Glenn and Cara know that Eliza's story has resonated with many and hope that people continue to share her story. "I think Eliza has touched the world by giving parents additional perspective into how much of a gift it is to have healthy children ― perspective to remember to enjoy the moments, take nothing for granted, and fiercely love," said Glenn. "Parents would go to the ends of the earth for their kids, and parents can relate with our cause and the fight we are in."
At the end of their original "Saving Eliza" video, Glenn notes that Eliza said, "Please share." "Well, she can no longer say those words at this time, so we'd ask for her, that those moved by her story please donate and share to save children's lives," Glenn said. "Hope is a nice word, but we need action. It is the action that makes the difference."