A long road to diagnosis
Devyn is 15 years old (2022) and has a contagious smile. As a baby, she had some trouble meeting milestones and sometimes experienced regression which resulted in an Autism diagnosis at 17 months of age. Her mom was an Autism Specialist and knew that diagnosis didn't quite fit and pushed for her to be evaluated further. At 2 1/2 years of age, Cleveland Clinic said that Devyn's symptoms were "like Angelmans," but again, this diagnosis didn't quite fit. Her family had nearly given up on having a name for her condition when updated genetic testing uncovered a mutation in AGO2. It was finally something that fit...
One of the things that stands out with Devyn's story is her resilience. Despite some professionals that felt she was not capable of learning or communicating effectively, Devyn has grown tremendously over the years. Her family knows that Devyn's special medical diet for seizures and the addition of an epilepsy service dog in preschool made a big difference for her, but presuming competence has been the most important part of her story.
Her family strongly believes that Devyn's body "does not cooperate" and that her motor and sensory delays result in her disabling conditions (like lack of spoken language, difficulty with writing tasks, etc.). They have always been drawn to outside-of-the box ideas since Devyn herself is so unique and are currently exploring spelling programs that have been designed for people with apraxia. As always, they have high hopes that Devyn's communication skills and overall independence will continue to improve. Currently, she relies on gestures, some signs, animated expressions and vocalizations, and her iPad or communication device.
The story of an epilepsy service dog
Devyn's original school district fought the accommodations necessary for her to use her epilepsy service dog at school. Devyn's mom got the NYS Department of Education and the US Department of Justice to side with them. After an 8-year federal court battle, the school district finally backed down, which set a legal precedent for the entire country. This is a huge accomplishment and highlights the power of advocating for our loved ones.
"The American Disability Act (ADA) guarantees individuals with disabilities equal access and equal opportunity in all areas of community life, including in schools," James P. Kennedy, Jr., U.S. Attorney for the Western District of New York, said. “This agreement is an important step forward in ensuring that students with disabilities can fully participate at school and in all educational programs.” (Craig G. "Feds, Gates Chili schools settle 8-year legal battle over girl's service dog”, Democrat & Chronicle, Aug 2020).
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