Last July, our 4-year-old daughter Eliza was diagnosed with a rare terminal genetic disease called Sanfilippo Syndrome-Type A. In one terrifying instant, we were told that we would have to watch her fade away before our eyes.
Eliza and other children with this disease 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. It is everywhere and the world needs to know.
Eliza Today and Her Future
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.
These devastating changes are a 100% certainty if she doesn’t get treated, and soon. It is a parent’s worst nightmare, and an unfair sentence for any innocent child.
But there is hope! There is a gene therapy trial scheduled for late 2014 that is specifically for children with Sanfilippo Syndrome. This treatment would save Eliza and literally stop this disease in its tracks overnight!
The research conducted points to this clinical trial being the answer to stopping this disease, which means the only thing standing between Eliza and her miracle, is money. The trial is lacking funding to remain on schedule, and every moment counts as Eliza approaches the tipping point when her disease will take an irreversible turn for the worst.
She and many others like her are counting on you to donate to the cause or share this story so that they can have a chance to leave their mark in this world… The clock is ticking.
Between October 2013 and June 2014, we are reaching out to incredible people like you to help us raise $1 Million through GoFundMe in time to save Eliza. All funds will go to support the Gene Therapy trial at Nationwide Children’s Hospital in Columbus, Ohio.
The total amount needed in the next several months is $2.5 Million and we are working day in and day out with other affected families. We have started our own non-profit 501c3 Cure Sanfilippo Syndrome (Tax ID: 46-4322131) with no paid employees. All donations here are tax-exempt. In several months, $250,000 total has been raised from running fundraising parties, 5K runs, golf tournaments and dance-a-thons...and we continue to work non-stop....WE WILL NOT GIVE UP, but we can’t do this without more help… there just isn’t enough time. Please become a part of this miracle with us.
Please Act Today
What would you do if you knew that money was the only thing standing between your child and their chance at a full and happy life? What would any parent do?
We can’t let this happen. We can’t stand by and watch our little girl lose everything she is, suffer unimaginable pain and frustration and ultimately die. What would we tell her big brother in a few years, when the disease has taken over completely? What would we tell ourselves?
Please help support our urgent, lifesaving mission. Every cent counts, but even if all you can do is forward this link to as many people you know, you will have our eternal gratitude.
Help us. Join us in our quest and then check back often to see how your contribution helped spark a miracle. With your help, she will become one of the first children in history to survive Sanfilippo. Together we can make history and save thousands upon thousands of lives, so that never again does a parent have to break down in a doctor’s office when they find out that their child has this debilitating disease.
With your help, the WORLD will know Eliza O’Neill’s name.
Thank you. From the bottom our hearts, with all of the gratitude and affection we could possibly offer… THANK YOU!
Determined, hopeful and eternally grateful,
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