Our daughter Olivia just turned three. She is energetic and loving. And she’s dying. We have one chance to change her fate and it has to happen soon. We need your help to save Liv’s life.
When Olivia was born, we were so excited! We couldn’t wait to start showing her the world and watching her experience life. Dance lessons, teaching her guitar, and baking together. All those things you envision for your child.
When Olivia was born, she passed all the newborn screening tests and was given a clean bill of health. However, in her first two years, she constantly had recurring ear and sinus infections and frequent loose stools. We pressed Liv’s pediatrician for answers at her two-year-old check up and began seeing a series of specialists, hoping for an answer. We were so scared the answer would be some type of chronic condition that she would have to live with her entire life. Little did we know that something even worse lay ahead.
In March 2022, our world came crashing down. Olivia was diagnosed with Sanfilippo Syndrome Type B, a genetic degenerative brain disorder in children caused by a single missing enzyme. It’s the worst disease you’ve probably never heard of. It’s like Alzheimer’s, but in children. It’s 100% fatal and there currently is no FDA-approved treatment or cure.
Because Liv lacks this single enzyme, toxic cellular waste material is building up in her brain every second and damaging it. As the degeneration rapidly progresses, Liv will stop walking, stop talking, stop being able to feed herself. She’ll develop movement disorders and seizures, suffer severe dementia, endure a lot of pain and suffering, and then she’ll die. All in the coming years.
Today, Liv loves playing waitress, helping take care of her baby brother Liam, and singing with us during bedtime snuggles. Without a cure, that will all go away and Liv will pass away in her teens.
But there is hope! There are promising forms of treatment that are already being investigated for Sanfilippo Syndrome. They just need funding to continue and reach the clinical trial stage.
Current promising research underway that could lead to clinical trials includes gene therapy, substrate reduction, and drugs already-approved for other diseases that could also help children with Sanfilippo. All of these focus on lessening the build up of the toxic cellular waste in children’s brains and bodies, which reduces neuroinflammation in the brain and prevents development of Sanfilippo’s many disease symptoms.
It just needs funding.
Large pharmaceutical companies have little interest in rare diseases like Sanfilippo because they don’t see ways to make a profit. Angel investors and federal grants are incredibly difficult to obtain. Which leaves funding the research that could save our children to parents, patient-led organizations (like Cure Sanfilippo Foundation), and kind-hearted people willing to donate.
We need your help to fund research so a clinical trial can happen.
Our goal is to raise $1 million dollars to fund the research that could lead to a clinical trial and give Liv a chance at growing up, a chance at life. We can’t just sit back and accept that she’s going to fade away and die, not when there is something we can do to try to save her.
This is as urgent as it gets. It’s Liv’s only chance.
There is no guarantee Olivia would be accepted into a trial. But it’s the only chance. And without funding for research and clinical trials, her future is certain. But we have to try. This is our only hope.
A parent’s love for their child is like no other. If you are a parent or simply love kids, you understand. Please, please help save our daughter.
There are three things we’re asking you to do. A campaign like this can grow quickly with your support. You are the key! We have faith and pray every day that your kindness, generosity, and compassion will help us make the difference for Liv.
1. Please donate what you are able. All donations go directly to the 501(c)3 nonprofit Cure Sanfilippo Foundation (Tax ID: 46-4322131) to fund research for Sanfilippo Type B and are tax deductible.
2. Most importantly, please share this page with everyone you know via social media and email by clicking share button or typing in SavingLiv.com.
3. Please leverage any avenue you have to make this go viral. Send leads or tips to us by clicking the Contact button at the bottom of this page.
Please help us give Olivia a chance at life. It has to be now.
Our deepest thanks. Words can’t even express how incredibly grateful we are.
Erin and Tyler Stoop
Follow the latest:
-- On Instagram: https://www.instagram.com/saving_liv/
-- On TikTok: @saving_liv
-- On Facebook: https://www.facebook.com/profile.php?id=100088622245570
Donations are tax-deductible.
Other ways to donate:
-- At Liv's campaign on Cure Sanfilippo website, donate via Venmo, PayPal, ACH, digital wallet at this site.
-- To make a recurring donation (monthly, weekly, quarterly, or annually), click here.
-- www.CureSanfilippoFoundation.org (click “Donate” and put “Saving Liv” in the dedication)
-- By check: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260. Include “Saving Liv” in the memo.
-- By stock gift, message us and ask for details by clicking contact button at the bottom of this page.
-- By cryptocurrency at www.CureSanfilippoFoundation.org/crypto
Special thanks to the artists, who graciously dedicated their time and talent:
Video footage by Alex Sharon, Pilgrim Visual, LLC
Video editing by Benjamin Von Wong
Photography by Traci Stoop of Stoop Images, the Stoop Family, and Vanessa Wyler of Vanessa Wyler Photography
Original music by KeithTim Anderson
Audio mastering by Andrew Kesler
Information for the media: https://www.curesanfilippofoundation.org/SavingLiv
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WHERE IS YOUR MONEY GOING?
Every dollar goes to Cure Sanfilippo Foundation, a 501(c)(3) nonprofit organization which funds research that can lead to a clinical trial for Sanfilippo Syndrome Type B that could give Olivia a chance at life. Donations are tax deductible. 100% of the funds raised here will go toward the research. We are currently racing against time to fund this potentially life-saving research that could lead to a clinical trial. It will help Liv and so many other children have a chance at life, today and for generations to come. ***Any donations received above the goal will go directly to Cure Sanfilippo Foundation new research projects in need of funding***
WHY SO MUCH MONEY?
Getting a clinical trial up and running can cost millions of dollars. In rare diseases, large pharmaceutical companies have little interest because they don’t see ways to make a profit. The truth is that it is left up to parents, patient-led organizations, and donors to drive and fund the research for treatments and a cure. This will help fund research that could lead to a clinical trial that can possibly help Olivia and other children with Sanfilippo. Raising this amount of money may seem daunting, but it has been done before and research and clinical trials have happened as a result. It can for Liv too.
TIME IS OF THE ESSENCE
Sanfilippo Syndrome causes children’s cognitive and physical abilities to be completely taken away quickly once they begin regressing. In time, children regress back to an infantile state, likely never to return. This rapidly-progressive neurodegenerative disease will soon start taking over completely. Olivia is 3 years old. We don't want to lose our daughter. This must happen now.