Susie was diagnosed with SHINE Syndrome after she had a few seizures and we wanted to know what was causing them. Our family history has no seizures so it was very odd. However, has had symptoms since birth. When she was 1st born, she had torticollis but I look back and I still wonder if those were seizures. They were on the same side she has seizures now. She has always been developing slowly. For example, the 1st year of her life she barely moved. She didn’t start to crawl or sit up until 15 months. She didn’t walk until close to 2 years old. She is 2 and half and still struggling with going up and downstairs standing and has low tone in her stomach so swinging is different. She also has been way behind on speech. She has about 50 words now but rarely will pair words. She only could say mama and Dada at 18 months. She has needed more sleep than my other two children. I now know that is SHINE related. She is special. We love her. She has several tests coming up so my hope is to start this story but post it with the results of her other tests. SHINE is an ultra rare disease. Only about 150 cases are known in the entire world. Please note: I met Gerald and heard about Orange Socks. I would like to do a video story about my daughter. I am also willing to introduce Gerald to the SHINE Syndrome Foundation Board so he can get some more stories about SHINE Syndrome to share! Thank you, Melanie Queen

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