Customized Adventures for Kids with Rett Syndrome with AJ Tesler and Dr. Cary Fu TRANSCRIPT

Empowered Patient Podcast

AJ Tesler, an award-winning producer and director who, along with his wife Jenny, is launching Magnolia’s Guide to Adventuring, a new documentary video series created with support from Acadia Pharmaceuticals, inspired by their daughter Magnolia’s experience with the rare genetic neurodevelopmental disease Rett syndrome. We’re also joined by Dr. Cary Fu, a pediatric neurologist at Vanderbilt University Medical Center, who emphasizes the need for early diagnosis. The video series highlights the adventures children with Rett syndrome can engage in. While Cary emphasizes the importance of safety and consulting with specialists before pursuing an adventure, AJ and Cary encourage people to recognize the capabilities of children with Rett and focus on what they can do.

AJ explains, "We made a documentary about that experience and those initial steps that we took called Magnolia’s Hope, which is available on iTunes and Amazon streaming, as well as a bunch of other places. And in that documentary, my wife so sagely presents it as we want to make sure that when there’s a cure, she’ll have stories to tell. That’s an inspiring way to think about all of this. Her story does not just have to be about Rett syndrome. It doesn’t have to be about all the things that she can’t do. It can be about all the things that you can do."

"Beyond that, it was also about finding families to come along on these adventures with us. Some of the families are adventurous and have tried these things before. Some of them have never done any of these things before. That was part of the creative vision for the entire thing, which was to show that no matter what your disability is, no matter where on the spectrum you are, as long as a doctor says that it’s okay to do these things, then, by all means, there are organizations that can help you do these things."

Cary elaborates, "I wouldn’t say it’s necessarily unusual, but I do think that what AJ and Jenny have done with their family is very inspiring. I think families come in all sorts of shapes and sizes. I think the important thing is I encourage all of my families with Rett syndrome to make sure not to allow the diagnosis to define them. To make sure that whatever expectations they had as a family before the diagnosis was made and before they realized that there would be potential limitations and need to make modifications, they should feel free to pursue those things that they wanted, the hopes that they wanted for their child."

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