New documentary series dives into US adventures of Rett families

1st of 10 episodes shows teen using adaptive gear to try sports

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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The first episode of “Magnolia’s Guide to Adventuring,” a documentary series that follows people with Rett syndrome and their families as they head out on adventures across the U.S. to raise awareness and inspire others living with the disease, has been released.

Overseen by award-winning producer AJ Tesler and his wife Jenny, the 10-episode documentary series stars their 13-year-old daughter Magnolia, known as Maggie, who has Rett syndrome and relies on adaptive gear to try out sports such as downhill skiing, ice skating, and horseback riding.

In a teaser, Magnolia, who uses eye-tracking technology to speak, said, “They used to say kids with Rett syndrome couldn’t surf. Or ski. They would say we couldn’t swim. Or climb. But what if we can? I’m Magnolia, come adventure with me.”

“We believe it’s crucial to showcase the incredible spirit of individuals living with Rett syndrome and all the things they are capable of, despite their symptoms,” AJ Tesler, executive producer and director of “Magnolia’s Guide to Adventuring,” said in a press release.

Upcoming episodes will drop one by one on Rett Revealed, a website that Acadia Pharmaceuticals — the company that supported the making of “Magnolia’s Guide to Adventuring” — has designed to explain Rett syndrome and share real stories of people living with the disease.

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Documentary series supported by Acadia, developer of Rett therapy

Acadia, which markets Daybue (trofinetide) for adults and children with Rett syndrome, is working to advance breakthroughs in neuroscience.

Brendan Teehan, Acadia’s executive vice president, chief operating officer, and head of commercial, says the company has “had the privilege of working closely with the Rett syndrome community and have learned a lot about the lives of individuals and families living with this condition.”

“We are honored to support the Tesler family in their work to redefine perceptions and highlight the remarkable abilities and spirits of individuals with Rett syndrome,” Teehan said.

Rett syndrome is nearly always caused by a mutation in MECP2, a gene that provides instructions to produce a protein needed for the brain to develop and function normally. The disease typically occurs in girls, as most boys who carry a mutation in the MECP2 gene usually do not survive early infancy.

For the first 6 to 18 months after birth, children with Rett develop normally. Then, they begin to lose the ability to sound words out, to walk or crawl, and to grasp or intentionally touch things with their hands. They often make repetitive hand movements and grow more slowly.

Other Rett syndrome symptoms include trouble breathing, cold hands and feet, an abnormally low muscle tone, and scoliosis, marked by an abnormal curvature of the spine. Such symptoms can make it difficult for people with the disease to go outdoors and stay active.

“It’s been a long journey for our family since Maggie’s Rett diagnosis, and we’ve learned how to make the most of every day by adapting adventures that we can enjoy as a family,” said AJ Tesler, who also directed “Magnolia’s Hope,” a film about his then-3-year-old daughter.

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‘Magnolia’s Guide to Adventuring’ kicks off with family ski trip

In the first episode of the new documentary series, Magnolia and her parents travel to Mount Sunapee in New Hampshire to meet the Randol family and their daughter Ruby, who also has Rett syndrome. Ruby Randol learned how to downhill ski using an adaptive sled with adjustable belts.

“For Ruby, she has a tough time regulating her body temperature. When she skis, she puts muffs over her gloves and boots on her boots,” Magnolia said. “For me, I have a tough time staying cool. It is similar, but different.”

Ruby, who had undergone spinal fusion — a surgery to correct scoliosis in which doctors permanently join together two or more bones in the spine to prevent them from moving — started skiing when she was around 11 or 12 years old, her parents said.

Skiing downhill with adaptive gear was made possible with the help of the New England Healing Sports Association (NEHSA).

“It’s always a risk, but … we did it,” Magnolia’s father said after the skiing session. “We ended up having a good time, and you can’t fake it. You can’t fake a good time!”

[Magnolia] inspired us to make this series as a celebration of the uniqueness of each person and family affected by Rett syndrome in hopes that we can inspire all families to create their own adventures.

For Magnolia, the adventure was not just trying skiing — it was also getting a chance to see how others with the rare disease are finding ways to do new things.

“I like meeting other people with Rett. It makes me feel not alone,” Magnolia said, adding, “I wonder who we will meet on our next adventure.”

In the second episode, which will be available May 30, Magnolia again will try skiing — but this time, the DeSantis family will teach the teen how she can adapt her equipment for cross-country.

AJ Tesler said his daughter is the driving force behind the family’s quest for adventure.

“She inspired us to make this series as a celebration of the uniqueness of each person and family affected by Rett syndrome in hopes that we can inspire all families to create their own adventures,” AJ Tesler said.

Acadia’s Daybue was the first treatment to be approved in the U.S. for people with Rett syndrome, ages 2 and older. The therapy is now under review in Canada.