Eliza O'Neill is just a normal 4-year old, she likes to sing, play soccer and be around her family. But in just few months this is all going to change. Eliza was recently diagnosed with the very rare and terminal Sanfilippo syndrome, which is going to deteriorate her body and brain functionalists very quickly up to a point she won't be able speak or walk. Few photographers and photo companies came together to help Eliza's family raise funds to find a cure for the disease.
The life expectancy of kids who are diagnosed with the Sanfilippo syndrome is very low, and they usually don't even reach their teens. But there is hope for Eliza, as there might be a cure. The problem is - 2.5 Million dollars are needed in order to get the gene-therapy treatment. So far $50,000 were donated - this is where we can all come in and help.
Last week photographer Benjamin Von Wong (with the help of BorrowLenses, DL Cade, Guillermo Castellanos and SmugMug) flew to South Carolina to film this touching video about Eliza in hopes to make her story spread around and touch the hearts of more people. Benjamin stayed with the family for 9 days to learn their story, and then to film the interviews as well as the normal-day activities - playing in the garden, running around and playing soccer. Von Wong hopes his video will help raise the money needed for Eliza to get the cure.
O’Neill Family: "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."
Let's make a change in someones life. Let's save a life. Share this story with your friends and family and let's raise the money needed for the cure.