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World’s Biggest Birthday Bash

(Last Updated On: November 12, 2014)

And YOU are invited to be part of the celebration! turning this day into one of joy.

“Birthdays should be joyful occasions when parents celebrate the accomplishments their children have made in the past year, often talking of how they’re “growing up too fast”.  For us, that’s not the case. For our family, each birthday is a painful reminder of the decline we will continue to see if something doesn’t happen soon. Turning 5 years old should not be so bittersweet, and I know come November 16th, the tears will flow. We made it a point early on not to cry in front of our children, especially Eliza’s big brother, but it has become more difficult.  Emotions hit you when they hit you.  My son asks me “Dad, are they happy tears?”  “Yes, they are buddy” is all I can bring myself to tell him.

This is a pivotal time in the life of most children with Sanfilippo, and Eliza is just over the top of her roller coaster, which is starting down. It’s unfortunate, but we can halt it and soon.” – Glenn O’Neill

Have you ever saved someone’s life?

Most of us outside of the medical or military professions would probably say no. Can you imagine being an integral part in saving not just one life, but ending an entire disease? This Sunday, November 16 you could literally save lives by joining in the world’s biggest birthday bash for Eliza.

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How can you join this birthday party? Go to the Facebook Event page , select “Going.” Go to www.SavingEliza.com and donate. Then invite all of your Facebook friends to the party.

As of today, in order to fund the trial for this gene therapy, we need around 5,000 people to donate $100 which will put the Sanfilippo foundation at the dollar goal necessary to get this trial started on time to potentially make a difference in Eliza’s life and the lives of all the children living with this disease world-wide, approximately 1 in 70,000 births.

Why should you join? I could wax eloquent and have in my posts The Last 365 and Too Late, but I don’t think I could say it better than her father, so I’ve shared his excerpted letter.

This is Eliza’s Father Glenn. I’m writing, first and foremost, because I want to THANK YOU from the bottom of my heart for your support this past year. You have been an integral part of saving my daughter’s life, and our family can never express how grateful we are that you would help us to stop Sanfilippo Syndrome and save Eliza.

Together, we’ve come so far, and your support has been humbling. But now, well over a year into our journey to try and give Eliza a chance at life, we as a family are exhausted. It is a grueling process, putting your family’s struggles out into the public in hopes of saving your child’s life. But we won’t give up.

If you’ve been following our journey, we know YOU are probably tired as well. Tired of our campaigns and requests. And so we’re hoping to reach our goal and finish this struggle once and for all with one final push: one day, the remaining $600,000, and a chance at life for Eliza. Allow me to explain.

We live on hope, but as my wife said in the SavingEliza video, “Hope is a nice word, but we need action.” Well you’ve shown us action.

We plan to raise the remaining $600,000 as her birthday gift, on this one day at SavingEliza.com.  With more than 30,000 unique supporters, it not only ‘can’ happen, it will. It is ambitious, but you have already made us believers in the impossible. You’ve made us believe in happier birthdays in her future. We can see it. It’s no longer a far-flung hope, but a very real possibility: a 10th birthday, an 18th, and a 30th. Christmas mornings and Prom dates and arguments with her parents who “don’t understand her” all seem so possible now.

To reach this goal, on November 16th, we’d need 6,000 supporters at the $100 birthday gift level, or 12,000 at the $50 gift level. This will be our ONLY donation request to you this year, as it must happen now. If you were planning to give again later in the year, please do so on Nov 16th. This request is to you. Her chance at a real future is one $600,000 birthday away..curing this disease within reach and in time for Eliza.  Will you be able to give this birthday gift of $50 or $100?

What better way to end the SavingEliza.com campaign than to complete the funding on Eliza’s 5th birthday?

I always struggle with how to thank someone that has literally helped save my child’s life… Words aren’t enough, and I don’t know what sort of actions would be sufficient. I feel you’d want us to thank you by simply holding her, hugging her, loving her, and making sure we are doing everything in our power to save her. I can assure you that we are, and we will.

Thank you with everything that I am, Glenn O’Neill (Eliza’s Dad)

I ask you, Heaven Not Harvard reader, to share this post, share this Facebook party, invite your friends. Get ten friends together, have a party and donate on November 16th. Help us further this crucial research that may give Eliza a chance at many, many more birthdays, something all little girls deserve.

LIKE, SHARE, spread this one last campaign. #1Day1Goal #SavingEliza

 

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