An inspiring tribute to courage and devotion
In this year of deeply moving documentaries, such as I Am: Celine Dion, I came across a newly released, heartfelt presentation, Magnolia’s Guide to Adventuring. This 10-part social media documentary follows people with Rett syndrome and their families, as they head out on adventures across the U.S. to raise awareness and motivate others living with the disease. And it’s a very personal project that is near and dear to the award-winning producer and director’s heart.
It was created by AJ Tesler, and was inspired by his own 13-year-old daughter, Magnolia (Maggie) who lives with this rare disease. For his part, AJ has created thousands of hours of content on Netflix, Comedy Central, Lionsgate, MTV and Sony, and worked with such top comedians as Bill Burr, Jeff Ross and Whitney Cummings, showcasing their humor and talents. And as founder and president of Peak Curiosity, a bi-coastal production company that specializes in comedy and new media projects, he has produced and directed countless specials, feature films and documentaries. His mission is to entertain and empower audiences the world-over.
AJ and I met recently to talk about the series, and I am excited to share his inspiration to help make my readers and listeners feel Better Than Before based on the knowledge of one little girl’s heroic willpower and accomplishments.
Jane: AJ, can you tell us a bit about how you and your family are raising awareness about Rett syndrome?
AJ: We’ve been trying to raise awareness about the disorder since we learned about it in 2013. I was shocked to see how few people had ever heard about it and was sure that if I could raise enough awareness, we’d be able to impact some real change. I started making YouTube videos about our experience in hopes it would help other people and that led to a documentary, Magnolia’s Hope which is available to rent or buy on Amazon and iTunes. And now, we’re continuing to raise awareness about what it means to live with Rett Syndrome with our series, Magnolia’s Guide To Adventuring is a 10-part video series produced by my wife Jenny and me that follows our family as we are joined by other Rett families on adaptive adventures across the U.S. We go downhill skiing, ice skating, surfing, horseback riding and more. The goal for the series is to show that individuals with Rett syndrome, like Maggie, may not lead a “typical” life, but they can lead an incredible one, and that they are capable of so much more than some may expect.
Jane: That sounds like something that is both very important and fascinating!
AJ: Yes, each episode highlights what it’s like to live with Rett syndrome and shares how we adapt our adventures around the individuals’ challenges and capabilities. You can watch the series on RettRevealed.com.
Jane: Can you explain what Rett syndrome is?
AJ: It’s a rare neurodevelopmental disorder that affects mostly girls and sometimes boys. It is typically caused by a genetic mutation on the MECP2 gene. A child with Rett syndrome initially starts developing normally, but by between 6 to 18 months old they begin to lose some of their developmental skills. From around age 10 onward, some individuals living with Rett may experience a decline in movement as well.
Jane: Talk a little, please, about Magnolia’s Rett syndrome journey and how this rare disease has affected her.
AJ: As a baby, Maggie seemed typical and healthy, crawling, talking, and hitting all her milestones. But around the age of two, she started to exhibit mysterious symptoms, such as balance issues, hand wringing, speech loss, and rocking for hours in her crib. After taking Maggie to numerous specialists, she was diagnosed with Rett syndrome at three years old.
Jane: What is she like today?
AJ: She has lost most of her functional hand use, and she does not really have access to any verbal language at all. However, she uses a couple of different techniques to communicate. For example, one way is through an eye gaze computer device where she can trigger pictures on a screen with her eyes that will generate a computer-generated voice. She has chosen a British voice because she wants to sound like one of her favorite actors. Maggie also communicates by looking at you and smiling to signify yes and looking away to signify no.
Jane: What outside help did you find most beneficial?
AJ: From the beginning, we’ve engaged with therapists and other supportive health care providers – in addition to her Rett specialist – to help her maintain and build upon her skills. Our collective dedication to occupational, physical, and speech therapy has helped her stay strong. As you’ll see in one of the series episodes, Maggie rides horses really well. She’s been riding since she was three, which helped her maintain core strength. She also communicates with the horse through touch.
Jane: Do a lot of patients need wheelchairs?
AJ: Yes! With Rett syndrome they use wheelchairs with feeding tubes, experience seizures and debilitating anxiety, and require around-the-clock care. We are very fortunate and grateful that with support from our healthcare team and interventional therapies that our daughter has remained relatively strong, is currently doing well, and has a smile that can light up any room.
Jane: What inspired you to create the series?
AJ: Maggie is the inspiration behind the series. She is a daily inspiration to us; she takes on each day with gusto no matter what her Rett symptoms bring. It’s been Maggie driving us to go on these adventures as she wants to do all these things, and it’s special to get to do them as a family. While it takes a good deal of planning and effort, the smile on her face getting to have these experiences makes it all worth it.
Jane: What do you hope people take away from the series?
AJ: We hope families impacted by Rett syndrome or another complex condition, and even those that are not, see that it’s possible to do what may feel or seem impossible. In short, we want to inspire families to consider taking on their own adventures, so long as it’s something their physicians feel comfortable with. I encourage families around the country to seek out adaptive adventures from established advocacy and sports organizations. I think Magnolia says it best: “What if we can?”
Jane: What is the biggest misperception about people living with Rett syndrome?
AJ: That they cannot lead full and exciting lives. We hope this video series shows that those living with Rett syndrome are so much more than their diagnosis. While they may face certain challenges, their spirits are limitless. Each person has unique abilities and makes important contributions to the world. We feel it is important to celebrate what those living with Rett syndrome can do, and to illuminate the abilities they possess. While they are living with Rett, it does not define them.
Jane: Thank you, AJ. What a pleasure to speak with you and learn about the amazingly heartfelt and uplifting journey your family is going through! Above all, I join with all of my readers in wishing Magnolia the best always and that she knows that she is an inspiration to us all as she continues to travel a hero’s path.
Upcoming episodes of the series, supported by Acadia Pharmaceuticals, will appear one-by-one on Acadia’s “Rett Revealed” website, www.RettRevealed.com. The website also offers an adventure book that you can download and use to document your own adventures with your family, as well as access educational resources on Rett syndrome.
