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California, USA
11 years old
March 6, 2019

Payton

Around age 2, we knew something was going on with our little Payton. She wasn't talking as much as her sister. We always called her our quiet child. It took her almost 17 months to walk. We started looking into tests and procedures to uncover what's going on with Payton. Around 3 years old, an EEG revealed she was having seizures. Which broke our hearts. Many more tests were done all of which uncovered nothing. Until October 2014 (age 6), when we got a call from metabolic indicating they found what Payton has, #Syngap1! This was hard to hear, but in the same breath, we had a label; an answer as to what is going on with Payton. How does this affect her? She is slower than most children her age. She has apraxia of speech, so she doesn't talk smooth like everyone else. She has to stop and think about what she wants to say. Payton is like a drunken sailor. She is off balance either due to her medication or her condition. She has low muscle tone and has many accidents and falls from time to time. She works hard to fit in and wants to be accepted. She is loved by many and her smile lights up the room. She has amazing determination to try hard and stubbornness to be independent. Currently she is participating in karate and ballet. She seems to enjoy both. We love her for everything she does and is and wouldn't change anything other than this genetic mutation. If we could give her anything in life, it would be to have all the abilities that the rest of us have. The ability not to allow seizures to intrude on her capacity to learn and grow. The power to increase her intelligence and grow up and have a career and a family and to be loved and appreciated and give back to the world in a way that she would enjoy. I pray that continued research finds solutions to help us find the normal button.

- The Durrett Family, Finding the Normal Button

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