The power of social media is incredible, and when used for good it can make magic happen – which is exactly what caring father AJ Tesler is hoping to achieve with his heartfelt appeal.
AJ’s daughter Magnolia is five years old and suffers from a rare neurological disorder called Rett Syndrome. As a result of her condition, she cannot speak or use her hands; she needs assistance with walking, and she spends most of her days hyperventilating.
As AJ describes in a video shared to Facebook, it is as though Magnolia has the symptoms of cerebral palsy, Parkinson’s disease and epilepsy all rolled into one. However, she is still considered a ‘mild’ case.
AJ recorded the message specifically for Facebook founder Mark Zuckerberg and his wife, Priscilla Chan, after hearing of the Chan-Zuckerberg Initiative to cure disease.
While the cause of Rett Syndrome is known and proven to be reversible, limited financing for research means that the 350,000-odd women suffering with the condition are not getting the treatment that could change their lives. And so, AJ has turned to Zuckerberg and Chan for help.
“You are able to unlock the gifts my daughter has to offer. If you will help us, you can fix 350,000 women around the world and their families…I know that [Magnolia] will be a part of the end of Rett Syndome. I hope you will be too,” he wrote, on cards presented during the video.
Amazingly, the message reached the intended recipients, and Mark Zuckerberg had a very special and hopeful message to send back to AJ and Magnolia.
“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!” he wrote.
Let’s hope this is the start of something wonderful for Magnolia and the thousands of others who are living with this condition.