From birth, Lyra was an extraordinary child. She was so curious, smart, and quick to learn. It all seemed too good to be true. By 2 years old she recognized the letters in her name, identified multiple colors and things. But her ability to put words together to make sentences lacked, so speech therapy made sense. After a year went by, she was slow to gain her speech, but all of a sudden she was becoming hyperactive, impulsive, forgetful, and even lacked the sense of danger that once kept her safe. We thought it was because a lot of external factors (moving, sick family, pregnancy with baby brother) was difficult for her to cope so she was acting out. Soon enough, she was becoming more sensory motivated and refused to do things she once knew how to do. It didn’t make sense. All signs pointed to autism, but how does a normally developing child randomly become “autistic” over the course of a few months? After chasing down the option of autism testing, a family friend noticed a tik toc video with a little girl who looked EXACTLY like our Lyra.
Weeks passed, denial was consant, but curiosity got the best of me and so the research about Sanfilippo Syndrome began. She checked all the boxes…
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