11 years old
California, USA
Warrior #10
(See Payton’s Updated Story below)
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
Payton’s Story – Updated December 14, 2024
17 years old
California, USA
Warrior #10
Payton is 17 years old now, and lives in Palm Desert, California. She was diagnosed with SYNGAP1-Related Disorders at the age of 6. She is currently in 11th grade at Palm Desert High School. She made the JV Cheer Team for the 3rd year, and is hoping to make Varsity for her senior year. Payton also goes to church group, does ABA, and loves to watch YouTube and FaceTime with her friends. She loves playing games on her phone and going to Dave and Buster’s.
Payton enjoys gymnastics and playing on the trampoline. She loves the water and would go into the jacuzzi every night, if it was possible! She has three dogs: a miniature poodle, a Cava-Poo, and a new Labradoodle, who is going to be her therapy dog. Payton loves adventure and traveling. She has been to Singapore, Malaysia, Dubai, The Maldives, Alaska, New Orleans, Paris, London, Florence, Rome, Hawaii, Cancun, Texas, Baltimore, & Canada. She loves, Disneyland, Great Wolf Lodge and going to Big Bear to play in the snow. Payton wants to be just like her older sister Drew and go to college and get a job at Starbucks. She also wants to live on her own.
Payton has absence seizures. She has been on a few different medications to control them, but she currently takes Zarontin and Epidiolex. In January 2024, she had an EEG and once we got home, she had her first drop seizure in the shower. She also had two more at school. We are still not seizure-free, but are increasing her medications. On our way home from our most recent EEG in November 2024, Payton started to cry, saying, “I just want to be normal, like everyone else. I do not want to have seizures, and I do not want to be special.”
After Payton was born, we knew something was different with her development compared with her sister. Doctors keep saying, everyone is different and not to compare. Around the time she was 2-1/2, her therapist told us, “Your daughter is having seizures.” We had an EEG done, and it showed that she was having hundreds of seizures every day! After this came numerous tests to find out “why”.
It took four years for the answer, and in 2014, we received “the call” from an overly-excited nurse saying, “We know what Payton has! It is SYNGAP1, and we only have one article on it.” While this nurse was excited to finally have a label, I was scared and sad that it was so rare – nothing was known about this disease. What will Payton’s life expectancy be? What will she become? Can she have a normal life as she grows older? Will I always worry about her and her future? What if we pass away – will her sister have to take care of her, or will she need to be placed in a home?
I remember someone posting a story about planning a trip to Paris, but the plane got re-routed to Switzerland, which is just as pretty, but it is not what we planned. We had to learn a new language, the language of special needs and SYNGAP1. We found a new community, a community of Syngapians and their caregivers who understand. When we have bad days or mood swings, we all get it – and we all wear the battle scars from trying to keep them safe. All we want for Payton is for her to have all that she wants in life and to be just like everyone else.
