A Letter from Eliza’s Dad. Eliza's 5th Birthday – November 16th
Hello, 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.
Eliza’s 5th birthday is on Sunday November 16th. 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.
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.
We’ve decided we need to take some time to turn inward, and mark these “good days” with Eliza as the future still remains uncertain. The demands at home with our kids have become more intense, and Eliza needs more of our undivided attention to keep her learning, and less of seeing her parents staring into computer screens and talking on phones (spreading awareness and fundraising).
We plan for a positive outcome – we must. The alternative is just too painful. But the day-to-day, inch-by-inch approach we’ve taken so far is robbing us of time we should be spending together as a family. 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.
Throughout, we have done our best to update you on progress. We’re potentially only a few months away from this treatment. Thanks to you, the drug product (medicine) for children is in development and pre-clinical steps are finishing up. But stopping this disease and the trial just needs a little more funding. In our various campaigns, we have asked you to share our story, our media segments, recruit friends, and sing songs. You have carried us, and together we’ve gone from $40,000 raised in October of 2013 to over $1.2 million a year later just at SavingEliza.com. It’s incredible, and humbling, and just barely shy of enough.
So far, we’ve made it a point to not ask you to give again, though we know many of you have, on multiple occasions, and we are grateful for your generosity. But now friends, we’ve run out of time.
And so we’ve decided to try to finish our fundraising campaign in a single day: on Sunday, November 16th. For Eliza’s 5th birthday, we’re asking all of the people who have so generously helped our family before to give her the gift of life.
We plan to raise the remaining $600,000 as her birthday gift, on this ONE DAY here at www.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)
PS: You inspire us to press on. Help make Eliza’s 5th Birthday on Nov 16th the one we’ll remember for years to come!
Give Eliza’s Birthday Gift at www.SavingEliza.com
, our foundation site at www.curesff.org
, or by check to: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260
Each of the above are tax-deductible and go to our 501c3 non-profit Cure Sanfilippo Foundation (Tax ID 46-4322131)
Eliza's 5th Birthday on November 16th