Saving Eliza

 
Raised: $386,230.00
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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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 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
 
 
 
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Have Questions? Contact the organizer of this campaign now:

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68 Comments

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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 1 day 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 2 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 2 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 3 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 3 days ago

C;est vraiment touchant et nous touche enormement meilleurs souhaits a toute la famille pour cette jolie petite fille.....

posted by Pierrette Guitard 4 days ago

Your story has reached Belgium and touched our hearts. I have shared and made a donation. I hope many will follow. Best wishes to your family and your lovely little girl.

posted by Sylvia Bruyninckx 4 days ago

People need to stop with the magic mumbo jumbo and prayers and god will heal this beautiful child. The ONLY thing that will save her and others suffering from crippling diseases is SCIENCE. For science to move forward, coinage is necessary. Donations for research and development is far more effective than believing in magic and invisible people in the sky.

posted by Jeffrey Foucault 4 days ago

Dr. Issam Nemeh was on the Dr. OZ show. Heres the clip: http://www.doctoroz.com/videos /man-faith-healer-pt-1

posted by Laurie Manoli 4 days ago

Hi this Doctor can save your baby. My husband and I are seeing him soon! http://drnemeh.com/ Praying for her and your family, Laurie

posted by Laurie Manoli 4 days ago

My best wishes for your very cute daughter and your goal, I would love to donate, I can't as our 14 son was just diagnosed with an incurable cancer, but I say great on you and may the world learn of her illness and help. We feel your devestation, and send you the best energy.

posted by Carrie McLeod 4 days ago

I bet your daughter will be cured before the end of the fundraiser! Believe it or not, there is a way much more economical and extremely effective. Sorry if my comment is shocking, but as parents, I would like to be informed in a similar situation. www.sautquantique.com

posted by Stéphane Loiselle 4 days ago

The Eliza Movement, reminds me so much of one of my favorite quote. It took one beautiful little girl named Eliza to make it happen. She is a true Angel...."Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has." ~Margaret Mead

posted by Connie Sanseverino 4 days ago

We are at a loss for words for the support coming in for our family and our daughter Eliza, to give her a chance at life. We could say THANK YOU a thousand times and it wouldn't be enough. We are truly and sincerely eternally grateful for the outpouring from around the world. In the past 2 weeks, over $280,000 has come in, and of that, just in the past 2 days, over $100,000! This is history in the making and you are making it happen. A particular comment on a post describes it very well "It's a tiny, tiny world, and kindness connects us all". From our hearts, THANK YOU!

posted by Glenn O'Neill 4 days ago

This is a sad but amazing story. Good Lord willing everything will work out. Have Faith and Trust Him. I met a little boy a few years ago who had to have his leg amputated at 3 years old due to Proteus Syndrome. He has changed the way I look at life in many ways. www.facebook.com/teedforetrey

posted by David Truitt 5 days ago

I have never posted anything to Facebook in the many years I've had an account. But I posted this today and asked people to check it out. Our family will give. From Corinthians: "But thanks be to God! He gives us the victory through our Lord Jesus Christ. Therefore, my dear brothers, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain."

posted by Kylie Neal 5 days ago

Silver and gold I do not have, but such as I have I give; In the name of Jesus Christ, Eliza be completely healed.

posted by Jonathan Shankster 5 days ago

May I suggest you contact the Bill and Melissa Gates Foundation. Their primary purpose is to fund medical research and they may help you reach your goal for treatment.

posted by Greg Ripley 5 days ago

This story reminds me of a true story that the movie Extraordinary Measures was based upon.John Crowley and his wife fought to find an enzyme to treat their children, two of who had a rare disease similar to this one.They were successful in saving their children. I would recommend getting in touch with this man He probably can give you some valuable pointers. Best of Luck

posted by Carla Danesi 6 days ago

You should try to contact Ellen Degeneres.

posted by Seska Sierra 6 days ago

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$386,230 raised by 8,168 people in 6 months.

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This is from the bottom of our hearts as Parents also! We truly hope you can get the money on time to cure your beautiful little girl.

 

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