Saving Eliza

 
Raised: $539,293.00
Goal: $1,000,000.00
 
 
 

Created by

Glenn O'Neill

335 Friends

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Eliza O’Neill Story (other donation options available below) Last July, our 4-year-old daughter Eliza was diagnosed with a rare terminal genetic disease called Sanfilippo Syndrome-Type... more

 
 
 
 
 
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Updated posted by Glenn O'Neill 6 hours ago

THANK YOU to everyone for the amazing support and love you are showing our family, Eliza, and others with this disease! Every single one of you is making a difference. You fill us with more and more HOPE every day!

Here's a little clip that makes us smile. Eliza and her big brother Beckham talking ice cream and animals at the zoo! *although they both are a bit distracted by the popcorn maker you hear :)*

You can follow all latest updates on Eliza at her facebook page at: www.facebook.com/ElizaOStory

Twitter at @SavingEliza #savingeliza

 

Eliza and Beckham talking icecream

 
 

Created by Glenn O'Neill on October 2, 2013

Eliza O’Neill Story (other donation options available below)

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.


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: curesff@gmail.com
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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83 Comments

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Donated & I have prayed for Eliza and other children like her with this awful disease. I hope that Eliza will be selected for the clinical trial and will be saved. You are amazing parents and have done amazing things to save her.

posted by Alecia Masters 6 mins ago

I had almost lost my son when he was born. I would have given anything to save him. All I could do was wait to see if an experimental drug would work. Thank god it did. He's 14 now. I hope you have the same fortune as I did.

posted by Melissa Lynch 6 hours ago

My husband ben and my 2 girls mailed our check today. As a mother of 2 precious lives we pray for your family every day. Sending love and prayers your way. Bless you all and stay strong!

posted by Becky Hooks 17 hours ago

My husband is currently treating for Stage IV lung cancer and I, too, have battled for cutting edge treatment to save his life. So I understand a little bit of what you are going through and am praying that you are able to get the funding for your baby. I also like the post by Adrianna Page about the Ellen Show....she is very much a philanthropist.

posted by Lisa Lind 23 hours ago

I hope you don't mind, I emailed the Ellen show on your behalf. Prayers and positive thoughts for your beautiful family.

posted by Adrianna Paige 1 day ago

Have you heard of "Dare Me for Charity" ? They're giving away $1,000,000 to the winner of the competition.. :)

posted by Jessica Hoffart 1 day ago

There is strength in numbers; everyone pray for this little Angel!

posted by Deb Vega 1 day ago

I am amazed at todays donations!!! Thanks to God, I am praying and believing, you will make it to your goal, and your precious baby is healed and will live a full healthy life.

posted by Pastor Debbi 1 day ago

My prayers go out to your lil one and your family. Hope!!!

posted by Yari Cardenas 1 day ago

My prayers and best wishes go out to you, I hope this story reaches the hearts of many and they act on it.

posted by James Giannini 1 day ago

Get well soon little angel. The world needs you!! May God bless you with good health and long life (Amen)

posted by Taufique Noorani 2 days ago

Easter Joy & Glory to Eliza & her dear ones. Also, giving for her & all those suffering from such rare diseases... May God bless you all, as well as the scientists, doctors, nurses, techs & researchers.

posted by Deb Blumenstein 2 days ago

Donating after I complete this message of sincere hope for Eliza and every child that suffers from this disease. Our daughter Isabella is very much the light of our lives as Eliza is in yours. Prayers as well are on the way from our family to yours. We'll share your story on FB and hopefully enough money will flow in to start the therapy!

posted by Kelly C Hagen 2 days ago

Just donated, its awesome to hit refresh on here and see the totals go up every time...you'll be to your goal in no time. Just shared on FB.....hopefully we can get the word out because once the word is out you'll get the money!

posted by Danielle McGrath 2 days ago

Confio en que Eliza tendra su cura mas pronto de lo que pensamos, de alguna manera quiero mandarles fuerza y ezperanza para pasar esta etapa, su mensaje comienza a traspasar fronteras, mis mejores deceos para Eliza y fuerza para ustedes.

posted by Cabeza Morro 2 days ago

My most sincere wishes for the cure of Eliza and all children suffering this terrible and devastating disease. Hope you can reunite the enough anount of money and strength as well to save your dearest and lovely daughter so that she can go on with her happy and beautiful life just as she deserves it.

posted by Liliana P Better 4 days ago

"There is a light in this world, a healing spirit more powerful than any darkness we may encounter. We sometimes lose sight of this force when there is suffering, too much pain. Then suddenly, the spirit will emerge through the lives of ordinary people who hear a call and answer in extraordinary ways." Mother Teresa

posted by Monica Hallinan 5 days ago

As the father of a little girl Eliza's age, this touched my soul. I'm donating now. I will share on my facebook wall as well. I sincerely wish Eliza is cured.

posted by Dan Bradbury 5 days ago

Ive posted this on my facebook and I hope it will reach from here to the moon. I hope it comes in time. Its not fair by any right of god of life of anything really that MONEY the root of all evil is what weighs on the scales of life. I pray you get this eliza and her parents. You have a beautiful family and I hope you have many many many more years with your beautiful daughter.

posted by Michelle Molisee 6 days ago

Your little angel Eliza is in my prayers as well as you (mom & dad) - I know your pain... In 2008 my daughter was diagnosed with a rare disease as well.... May God bless you and give you strength, may he touch the hearts of people and move them to help you reach your goal. I have made a small donation, and have shared your information... Stay strong O'Neill family!!

posted by Yadira Velez-Sierra 6 days ago

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God bless Eliza and your family. We will be keeping your family in our daily prayers!

 

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