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We provide you with articles on brain science, timely topics, and healthy living for those affected by neurologic challenges or seeking better brain health.  

Pictures of You
By Mary Bolster

These Parents are Giving Their Teenager a Life of Adventure Despite Rett Syndrome

AJ Tesler and his wife, Jenny, are inspiring families to think differently about Rett syndrome.

AJ Tesler with his daughter, Magnolia
Photograph by Marius Bugge

Your daughter, Magnolia, was 3 when she was diagnosed with Rett syndrome [a disorder that is caused by gene mutations on the X chromosome and is more common in females]. What were some of her early symptoms?
At 3 months, she had torticollis [head and neck persistently turned to one side]. Because of that, Maggie was working with a physical therapist. Since she wasn't developing physically at a typical pace, the therapist suggested we investigate further. When she was about 2½, she started losing her words, rocking herself violently to sleep, and wringing her hands. We took her to a developmental pediatrician, who ran blood tests for everything she could think of. All results came back negative except for Rett syndrome. [Symptoms include loss of speech, hand-wringing, seizures, scoliosis, and breathing problems.]

Maggie is now 13. What treatment has she had since her diagnosis, and how is she doing?
 Physical, occupational, music, aqua, vision, rhythmic, speech, and even hippotherapy [riding horses] have helped Maggie. One of her doctors told us, “If you don't use it, you lose it,” so we push her to do everything she can. Her ability to communicate verbally is limited, but her motor skills are pretty advanced for someone with Rett syndrome. She communicates using an eye-gaze computer, a tool that allows her eyes to trigger a computer-generated voice. She had uncontrolled seizures from ages 6 through 9, but they are controlled now. Maggie goes to public school, where the special needs program is very supportive, and attends as many regular classes as her stamina allows. She's creative, too. She won top prize in a statewide art competition.

You started a video project called “Magnolia's Guide to Adventuring.” How did that come about?
 My wife, Jenny, and I are very active in raising awareness and are always looking for ways to help people connect with the cause. Once we learned how Maggie communicates, we discovered many activities she wanted to do.

What sort of adventures has Maggie had?
We started filming last December and have completed seven episodes. Maggie has been downhill skiing, cross-country skiing, and ice skating. We've also filmed her horseback riding, swimming with dolphins, white-water rafting, and on an ATV safari. This summer, viewers can watch her water ski, surf, and kayak at RettRevealed.com.

In every episode, the adventure involves other families with Rett syndrome. What has that been like?
We've discovered how much joy it can bring to the other families. When Maggie swam with dolphins, we took the Shukovsky family to a dolphin therapy center in the Keys. They were nervous about how fragile their child was. Because we invited them to do this, they were able to break out of that mindset. The mother has now applied for a grant to take her son swimming with dolphins again.

What have you discovered in filming this series?
We've been amazed by the number of organizations that can arrange adventures for people with disabilities. Most are nonprofits funded through donations, which allows them to support these kinds of activities.

What message do you want to convey with this series?
We hope parents will reframe Rett syndrome. Instead of thinking of all the reasons not to be adventurous, we hope they ask the question, “What if we can?”

In a video project called “Magnolia’s Guide to Adventuring,” AJ Tesler shares how his daughter, Maggie, who has Rett syndrome enjoys activities like skiing, swimming with dolphins, and ice skating. He hopes to raise awareness and encourage other families to help their children with Rett syndrome become more adventurous. For those interested, we’ve compiled a list of companies that provide affordable or free adventures or can help you find groups near you.