Parents' first watch of a video they hope will save their daughter Liv

www.SavingLiv.com
Our worlds were crushed when we learned of Olivia’s rare, fatal, genetic disease, Sanfilippo Syndrome. We now had a diagnosis, and surely there was something we could do to help her? Learning there was no cure, no treatment, nor any open clinical trials felt like another nightmare we couldn’t wake up from. But we found hope in the research for Sanfilippo Syndrome underway that has successfully led to clinical trials in the past. We knew we had to be part of bringing clinical trial options to more children like Liv.
I’ve always been “in control” and this diagnosis has made me feel the most “out of control” I’ve ever felt. My daughter’s life is now in the hands of research and donations. So we took a big step. We decided to tell our story to the world in a very public way, to help raise money for research. The truth is that we have put nearly all of our hopes into our three-minute Saving Liv video and campaign. With your incredible support and generous donations thus far, we have raised over $330,000, so THANK YOU!
We are almost a year into this diagnosis, and there are still no open clinical trials yet for Sanfilippo Type B. We aren’t giving up! We launched Olivia’s fundraising video on her third birthday, December 3rd. What you don’t know is, Tyler and I did not see that video until December 2nd, and we recorded ourselves watching it for the first time. Just Tyler and I, together, hoping we had succeeded in letting the world into Liv’s life, so they could fall in love with her, just like we have. The videographers came to our house in September, so after a few months of waiting, we were finally about to see what the world was going to see the very next day. I cannot even begin to explain the emotions we were feeling that day. We were nervous, scared, proud, but most importantly, hopeful. When your baby girl is dying, and time is not on your side, you fight. This is our fight.
So the next step of our fundraiser, is sharing this video of Tyler and I, with you all. We have a very long way to go to reach our goal to help fund research that can lead to a clinical trial. Liv, and all the children given this horrible diagnosis, deserve a chance. We must fight for them. We know Liv’s life will be cut way too short, if a cure is not found. These are the emotions of two parents who want to save their daughter’s life.
Can you do us this one favor right now? Watch this new “First Watch” video and share it with everyone you know, asking them to do the same.
We are forever grateful for all the good in this world, and all the people who want to help our family.
Erin & Tyler

[@soukyc23]

Donated. My heart goes to you

[@destinymaddix-asiamah2198]

She is so adorable ❤❤❤❤❤❤

[@jeanfarrell8017]

Donated

[@chelciewentzel8191]

prayers❤

[@vidhoard]

I hope so!!!