Our little Lyra brings so much joy to our lives. Her eyes lead you into a pool of curiosity and wonder. Her smile is contagious and lighten the worst of moods, and her wild hair only emulates her personality. However, her spirit is dampened by the weight of her disease. Day by day, it's dark shadow creeps over her and creates a cage in which her little body is slowly succumbing to it's grip. Her once boundless energy is more of a leisurely stroll, her "I love you" is merely mimicked sounds, her memory of things she enjoys and her 'know hows' are becoming an irrelevant past. But one thing she keeps is her love, her giggles and her passion for story books being read to her. Her joy can never be taken, and her love will never be broken.
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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