After facing numerous challenges throughout her life, 18-year-old Marie DeWoody’s brain will contribute to autism research following her passing in May 2023. Marie was diagnosed with Developmental and Epileptic Encephalopathy (DEE) and later autism, as well as an ultra-rare condition known as Ring Chromosome 14, which affects fewer than 1,000 people in the U.S.
Marie, the youngest of three sisters, began experiencing seizures at 3-months-old. Her parents, both trained scientists, became aware of her developmental delays early on and worked diligently to communicate with her through non-verbal cues.
“She had a sweetness about her that’s pretty indescribable as well as an innocence, and a connection through her eyes which were the mirrors into her soul,” said her mother Yssa DeWoody.
In 2011, Yssa first learned about the opportunity to donate Marie’s brain to Autism BrainNet at a research conference focused on Ring 14.
“One of the scientific advisors who had been involved in autism research told me about the opportunity,” Yssa said. “Learning early on what a powerful research tool this was allowed us to be prepared for when the time came.”
Autism BrainNet, a program of the Simons Foundation, reported a significant increase in brain donations for autism research in the past two years as compared to the previous three years, due, in part, to their efforts to educate the community about this opportunity. The organization has noted that the gift of one brain can support hundreds of studies that advance the understanding of autism and related neurodevelopmental disorders.
“Marie’s life had tremendous value to us as a family and to a much larger community,” Yssa said. “Donation is a very personal decision. To me, this gift felt like honoring her life and continuing that exploration where we could learn from her in a way that sheds light on her individual syndrome and the community at large.”
The donation process involves not just the physical donation of the brain but also sharing the child’s story, including their challenges and triumphs.
“In other words, in addition to the physical donation, there is this donation of articulating who exactly your child was,” Yssa said. “This process is so beautiful and healing by being able to take a step back and remember the whole path leading to this point.”
Yssa emphasizes the importance of awareness for both families and researchers. “It’s critical that not only families know about this donation opportunity but also researchers know about this resource.”
Yssa also urges others to accept children with differences. “These children are truly treasures," she said. "We have to make space within our community to accept their differences and challenges and also lean into the idea that they have something to teach us.”
Autism BrainNet accepts donations from individuals with a diagnosis of autism, those associated with autism, and neurotypical individuals. For more information, families can contact Autism BrainNet’s 24/7 hotline at 877-333-0999 or visit their website at https://autismbrainnet.org.