There are days where stories come across my desk and I am compelled to write about immediately. Usually these involve tears and boxes of Kleenex, but they mostly always make me proud to be a part of a photographic community that cares for not only each other, but for complete strangers that have nothing to do with photography. This is one of those stories.
The photo community has joined together to help Eliza O’Neill, a beautiful 4 year old girl who has a big disease she’s fighting. Eliza was recently diagnosed with a rare and terminal genetic disease. The Sanfilippo Syndrome – Type A. The Sanfilippo Syndrome affects children like Eliza, who 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.”
The disease will very quickly rob Eliza, a fun-loving girl who loves to sing, run and play, of the ability to speak, walk, and the life expectancy for a child with this disease is very low. “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.” It is a painful and deadly disease, but there is hope!
But there is hope for Eliza and the other children who suffer from this frightening disease. There is a cure! A cure that will stop this disease overnight. The only thing standing in the way is money. The project needs 2.5 million dollars by June 2014 to fund the genetic trial to test it. And for little Eliza, every moment counts before the disease reaches a tipping point and is irreversible.
Last week, photographer Benjamin Von Wong, along with DL Cade of PetaPixel and with the help and support of BorrowLenses, SmugMug and ThinkTank, flew to South Carolina to film a video to raise awareness for Eliza’s cause. Benjamin spent 9 days with the family filming their story in hopes to raise money for Eliza to get the cure.
They’ve managed to raise about $143,000 on the Saving Eliza GoFundMe page, and their goal is $1 million. It can be done. Let’s help little Eliza and all the children out there who can be cured from this horrible disease!
From Benjamin Von Wong:
This is the result of the most emotionally charged week I’ve had of giving myself the responsibility to save a life.
I hope that I’ve managed to make something that will touch peoples hearts and move them to action. I hope that what I did here will not just make a difference… but THE difference.
I’ve done all that I can, and now it’s your turn.