Documentary 'Magnolia's Hope' Shows One Family's Journey with Rett Syndrome
When her daughter Magnolia, whose nickname is Maggie, was having trouble with movements and losing her ability to speak, Jenny Tesler started to document her daughter through video for medical purposes. At the age of 3, Maggie was diagnosed with Rett syndrome, a rare neurological disorder.
Rett syndrome, which is caused by a rare genetic mutation that affects the brain. Approximately 1 in 10,000 girls in the United States are diagnosed with the condition, according to the National Organization for Rare Disorders. From ages 7 to 18 months, girls with Rett syndrome typically hit standard milestones — like crawling, walking, and talking — before starting to lose these previously acquired skills.
After receiving the diagnosis, AJ Tesler, Maggie’s father, started to look for videos on how Rett syndrome affected the lives of girls like his daughter at different ages. He found close to nothing. This led to the Teslers documenting Maggie’s life and symptoms on their YouTube Channel and blog, both titled “Magnolia’s Hope.”
“We started to share those videos in case there were parents looking for a connection to somebody who has been through the same thing,” AJ said. Eventually those videos turned into a full-fledged documentary.
The documentary “Magnolia’s Hope,” released on Tuesday, shows the path to Maggie’s diagnosis, how different treatments and therapies have helped Maggie, and Maggie’s participation in a clinical trial. “Magnolia’s Hope” documents the ups and downs of different therapies and treatments, which may be all too familiar to those with rare diseases.
After Maggie lost the ability to speak, AJ and Jenny learned Maggie could still communicate nonverbally, which led them to push harder to help Maggie with her communication skills. There are still ups and downs. “She has great days where she can communicate a lot, and then there [are] other days where the apraxia component of Rett gets in the way and she just can’t.”
Also an experience that will be familiar to many in the rare disease community, the Teslers have also been looking to new treatment developments. When Maggie was 5, she participated in the phase 2 trofinetide trial for Rett syndrome. Maggie did not experience the type of improvements her parents had hoped for, which led Jenny and AJ to consider removing Maggie from the trial.
Through personal conversations and interviews in Magnolia’s Hope, AJ and Jenny speak about how funding for clinical trials could lead to treatments helping manage symptoms or curing Rett syndrome. (The Teslers cite a 2007 study as evidence that Rett syndrome could be cured).
“I look back at that experience, and it just depends on the week, she really had major ups and downs during the trial,” Jenny said. While research for the management and cure of Rett syndrome is ongoing, Jenny said it feels like it is taking “a long time because we’re living it.”
Through communication with Maggie, now 10 years old, AJ and Jenny have changed what they publicly share about her life. “Around the time that we were finishing this documentary, [Maggie] told us that she didn’t want us to be making videos anymore,” AJ said. They stopped posting videos for a long time. If videos of Maggie are shared for fundraising initiatives, Jenny said these videos are approved by Maggie.
While supporting Maggie with Rett syndrome, both AJ and Jenny find it important to help her experience the best life that she possibly can. In “Magnolia’s Hope,” this can be seen in the adventure sports she has participated in, like gymnastics, surfing and skiing. While COVID-19 has affected what the family can do, AJ and Jenny want to help Maggie continue to be happy and thrive.
“We want people to know that just because Maggie has Rett syndrome, it doesn’t mean she doesn’t live a full life,” Jenny said. “I want other families to not give up. It’s hard to be isolated at home. We’ll all get through this together.”
Image via “Magnolia’s Hope”