Marlton resident Brynn Connor and her family are featured in a new documentary web series called “Magnolia’s Guide to Adventuring,” to raise awareness of Rett syndrome, a rare and complex neurodevelopmental disorder that causes a progressive loss of motor skills and language.
Born with the syndrome, 13-year-old Brynn has never walked or spoken and she experiences occasional seizures. But she goes to school full-time at Kingsway Learning Center in Voorhees, communicating through an eye-gaze device. She also has a passion for adventure, including para-sailing, snow skiing, water tubing and simulated skydiving.
Brynn’s father Shawn noted that his daughter is a dedicated “Swifty” who also enjoys books and outdoor activities.
“Brynn loves listening to music, specifically Taylor Swift,” he said. “She also loves having books read to her or reading through her eye-gaze machine. She’s also an adventurer and a thrill seeker. She enjoys movement and feeling the wind on her face, so any activity that combines those activities.”
The Connor family are advocates for Rett awareness who regularly participate in events to benefit research into the syndrome. One of those events saw Shawn meet A.J. Tesler, whose daughter Magnolia also has the syndrome. Tesler is a television producer involved in the creation of content for Netflix, Comedy Central, MTV and Sony.
He got support from Acadia Pharmaceuticals to create “Magnolia’s Guide to Adventuring,” a 10-episode web series that documents his daughter’s various outdoor experiences. Each episode partners the Teslers with a new family who has a child with Rett syndrome.
Shawn responded to a March Facebook post by Jenny Tesler, Magnolia’s mother, inquiring if any families would be interested in white-water rafting.
“I immediately contacted Jenny saying that Brynn would absolutely be interested,” he recalled. “White-water rafting came about by searching for activities that Magnolia hadn’t done before, and also something that could be easily adaptable for those with Rett syndrome to take part in.”
In episode seven of the series – filmed in May – Brynn, her younger brother and older sister joined their father for the first white-water rafting trip with the Teslers in the Poconos. The families met at Jim Thorpe River Adventures, which adapts river excursions for kids and adults with special needs. Its owner took time to speak with the families to learn about each individual’s needs.
He also created a safe chair unit within the rafts to provide support for Magnolia and Brynn and put kayak chairs in the river boat, fortifying the base of the rafts with inflatable cushions for comfort. Pool noodles were used for posture alignment, trunk support and leg support.
Sitting in an adaptive boat and traversing level one and two rapids, Brynn was captivated by the fast speeds and bumps. Her participation showed that individuals with Rett syndrome may not lead a “typical” life, but they can lead one not defined by their illness.
“Brynn thoroughly enjoyed the experience,” Shawn related. “We were on the water for about an hour-and-a-half and we had some laughs, some bumps and hit some rapids. It’s really important for my wife and I that we experience things as a family.
“With her diagnosis, Brynn can’t do everything, but white-water rafting was definitely an experience that she was able to enjoy with her siblings, which is one of our goals.”
The Connor family took Brynn to Hawaii to swim with dolphins in April, courtesy of the Make-A-Wish Foundation. Since the rafting adventure, she has also taken part in adaptive surfing.
“Brynn loves swimming,” her father revealed. “She wears a floatation device that helps her so she can swim by herself. In terms of new experiences, next on our list is water skiing. I think Brynn would really enjoy that adventure.”
The full episode of Magnolia Tesler and Brynn Connor’s white-water rafting adventure can be viewed on the “Rett Revealed” YouTube channel or at www.rettrevealed.com.
