A Chance to Save a Child :: Eliza O’Neill’s Story

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What would you do if your toddler was diagnosed with a rare disease? A disease that would cause irreversible brain damage, and by the time she was 6 years old, your normal, healthy, active child would no longer even be able to talk.

And what if you learned, shortly after receiving her diagnosis, that there is a therapy trial scheduled that could stop this disease, but it does not currently have the funding to proceed?

This happened to a local family. The O’Neill family. Their 4-year-old daughter Eliza was diagnosed with a rare terminal genetic disease called Sanfilippo SyndromeType A last July. Now the family is in a race against time to raise the necessary funding so that the clinical trials may proceed before it is too late for Eliza and other children with this disease.

Eliza’s family needs your help. If you can spare even $5, or share this story with everyone you know, you can play a part in saving not only Eliza, but other children with this genetic disease.

Please consider a donation to them at Eliza’s GoFundMe page.

We have a chance to save a child’s life. THIS CHILD’S LIFE.

Eliza

Here is the full story about Eliza, as written by her parents.

Eliza O’Neill’s Story (other donation options available below)
Follow the O’Neill’s on Facebook.

Last July, our 4-year-old daughter Eliza 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.

Hope

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 make the medicine, administer the treatment, and 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.

Our Goal

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,

– Glenn, Cara, Beckham and Eliza O’Neill

Direct Line (803)-413-0525
email: [email protected]
www.curesff.org
www.facebook.com/ElizaOStory

Checks can be sent to: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260
(Checks here come directly to our Foundation, which was created by Glenn & Cara O’Neill, with no paid employees, no personal expenses)

 

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Alexa Bigwarfe
Alexa Bigwarfe is a mother to 3 wildlings who keep her on her toes. She is an advocate, activist, speaker, author & author coach, publisher, and podcaster. Her writing career began after her infant daughter passed away at 2 days old and she turned to writing for healing. Since then, she has used her writing platform for advocacy and activism to support mothers, children, and marginalized voices. She began a nonprofit, Sunshine After the Storm, to provide support, care, healing retreats, and grief recovery to mothers in their most difficult time. She is the creator and co-host of the Lose the Cape podcast, which features moms working to make a difference in their children's lives and has co-authored and published four volumes under the Lose the Cape brand. Her primary business is Write|Publish|Sell, a company dedicated to shepherding authors through the massive process of writing and publishing their books like a pro. She owns her own publishing house, Kat Biggie Press, and a children's book publishing company, Purple Butterfly Press - both dedicated to bringing stories of hope, inspiration, encouragement, and girl-power to the world. Learn more at alexabigwarfe.com.

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