We adopted our son, Taeson, from Korea when he was 6 months. He was a beautiful and easygoing baby. He met all of the typical milestones such as sitting, first words, and walking. However, as he got older, we noticed that he did not like to be around other children and would go out of the way to avoid them. It was our concern with respect to this behavior that led us to our first child therapist. During this time, Taeson attended a mainstream 3s and 4s program, but midway into his 4s year, the teacher told us that Taeson would run alongside the other kids on the playground, but didn’t understand the game. She also shared a situation in which Taeson was supposed to complete a drawing of a butterfly of which half had been drawn for him. Taeson was unable to complete the task. So, in addition, to play therapy and speech therapy, Taeson also started occupational therapy. This was where we discovered the word “ataxia.”
As a result of Taeson’s perceived difficulties, we enrolled Taeson in a school for learning difficulties for kindergarten. He did well in kindergarten. However, when he went into first grade, he stopped progressing. A second neuropsych revealed that his IQ had dropped to 74 from 90. No one had an answer for the drop. After a few more years and little progress, we did another neuropsych which confirmed the 70 IQ. At this point, we put Taeson into a school for children with more severe learning issues. Then, in June 2016, we took a family trip to Korea, and Taeson suffered his first grand mal seizure. We addressed the seizures back in NY and managed to get them under control. And then in August 2018, Taeson’s biological aunt contacted us to tell us that his birth mother tested positive for DRPLA, and they also believed that his biological grandmother suffered from the disease. She suggested we get Taeson tested, which we did. Taeson tested positive for the disease, and our journey to find a cure began.