What do you do if your 4-year-old daughter is diagnosed with a rare, debilitating metabolic disorder that will cause her pain, suffering and an early death? If you’re Eliza O’Neill’s parents, you turn to the Internet for aid. And if you’re one of over 20,500 and counting online civilians, you help them in whatever way you can.
After Cara and Glenn O’Neill learned their daughter Eliza had Sanfilippo syndrome, they searched for a solution and found that researchers at Nationwide Children’s Hospital developed what could be a cure for the syndrome. The *only issue* is that the cost for the clinical trial is a staggering $2.5 million.
But without funding for the trial, there’s no hope. Eliza will stop speaking in the next six months, she won’t be able to walk within two years, she’ll stop being able to feed herself in the next three to four, she’ll develop seizures and movement disorders and live a painful life until she faces an early death, likely in her teens.
The family knew they weren’t going to raise that kind of dough on the tight timeline they needed it from old-fashioned fundraising, so on top of organizing golf tournaments and dance-a-thons, they created a GoFundMe page. Compelled by their story, photographer, visual engineer and complete stranger (!) Benjamin Von Wong flew across the world to help the O’Neill family create videos to include in the campaign, a huge help to spreading the #SavingEliza message in a world wide web where news travels fast with the push of a “Share” button.
Watch the video below — warning! — it will break your heart, but maybe if you share it you’ll play a part in helping this family, and others who receive a similar diagnosis, find a cure.
You know how they say, “every little bit helps”? It’s true. The O’Neills have raised almost $1 million, shattering GoFundMe’s current records. The family is excited to report that their foundation can use that one mil to fully fund the production of the medicine for Type A Sanfilippo for the planned clinical trial later this year.
There’s still a ways to go to meet $1.5 million, so to learn more or donate to the #SavingEliza campaign, visit Eliza’s GoFundMe page here. And psst, pass it along <3
Have you ever started or joined an online fundraiser? Share your experiences with us + your fellow Brit + Co-ers below!