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4 years old
Charlotte, North Carolina

Ethan was the last of the Peterson trio and was born on October 12, 2017. He is the sweetest 4-year-old and rarely cried as a baby. In fact, I always remember thinking that he was so happy all the time, smiling and laughing.  He loved pureed sweet potatoes and apples in his early months. However, around 5 months, he started refusing food-except his bottle.  His then pediatrician said maybe he’s just a “milk baby and will eventually start to eat again, it’s nothing to worry about”. Ethan never started to eat again and will only take purees in his bottle with his pediasure.  He also continued to fall short of the developmental milestones for his age, and he was diagnosed with a global delay. Ethan’s little voice is music to my ears, but he only says a couple words. He was enrolled in OT, Speech and Feeding therapy prior to the pandemic; he is now in ABA therapy, and we are on waitlists for the other therapies. We are amazed to see how much ABA has helped Ethan thus far and are excited to see his continuous growth.

In July 2020, Ethan was diagnosed with Epilepsy. Ethan was having numerous atonic seizures or drop attacks, as sometimes called. His seizures are finally controlled with a the right mix of medications. In November of that same year, Ethan was diagnosed with Autism.  Subsequently, Ethan was diagnosed with SYNGAP1 in December 2020.

Ethan is a fun, loving 4-year-old (soon to be 5 in October).  He loves all things Elmo and Cookie Monster. He is fascinated with remotes and electronics also. He enjoys water play and will be content for hours. He also loves the park and enjoys just running with the wind in his face.  Ethan’s diagnosis can be challenging for a variety of reasons, but it does not define my sweet boy. We look forward to finding a cure for SYNGAP1 but are beyond grateful for Ethan and all that he has taught us and continues to everyday.

Read about the Peterson family’s struggle to get a diagnosis in this Feb. 23, 2024 article.