A.J. Tesler is a dad who is not giving up hope, not yet. His daughter Magnolia, now 5, was diagnosed with Rett Syndrome in 2014. That August, he made a short video titled “Save My Daughter. Share This Video” in hopes that the YouTube ad revenue would generate money to go toward funding a clinical trial to find a cure.
Now, Tesler decided it was time to reach out to Mark Zuckerberg and Priscilla Chan for help, as the couple founded the Chan Zuckerberg Initiative for “advancing human potential and promoting equality” this past December. Rett Syndrome affects 350,000 other girls and women and causes slowed development, seizures, and the eventual inability to move, talk, and use hands.
Tesler created a heartbreaking video addressed to Zuckerberg and Chan, since one of the Chan Zuckerberg Initiative’s goals is to cure disease, as a call for funding to develop a cure. In the video, he states:
“My daughter cannot speak. She cannot use her hands. Walking is difficult for her. She spends most of her day hyperventilating. And that is considered mild for Rett syndrome.
Rett syndrome’s cause is known and identifiable to a single gene. Symptoms have been proven in the lab to be completely reversible. But as a rare disease, financing and support for research is limited.”
Watch the video for yourself below:
Two days later, Mark Zuckerberg responded in a comment:
“I saw your video! Thanks so much for sharing Magnolia’s story. She sounds like a wonderful girl fighting a tough battle, and she’s lucky to have a dad like you. We started the Chan Zuckerberg Initiative to help kids like Magnolia grow up healthy and reach their potential—and one of our goals is to cure, treat or manage all disease by the end of the century. So tell Magnolia we’re working on it, and we’ll be thinking about her!”
