Our journey began in Minot, ND, where our daughter Dayton was born in March 2013. Amanda served as a Captain and Nuclear Missile Operator in the US Air Force at Minot Air Force Base, while Kent worked in the oil and gas industry. Six months later, work relocated us to Colorado for the next 3½ years.

     Dayton developed normally at first, walking a bit late, but soon running and building a vocabulary of about 20 words by 18 months. Around 22 months, however, everything changed. She began regressing: losing words, showing uncontrollable outbursts, biting her hands, pulling her hair, and banging her head in apparent pain. As new parents, it was heartbreaking to watch her suffer with no way to help.

     Doctors were puzzled. She received an initial autism diagnosis that never quite fit, plus a rare epilepsy called Electrical Status Epilepticus during Slow-Wave Sleep (ESES), where seizure-like activity dominated over 95% of her sleep, forcing her brain to "start over" daily. A neurologist at Children's Hospital Colorado explored options, including Rett Syndrome, but although she was now non-verbal, it didn't fully match her symptoms at the time. Genetic testing eventually came back negative for Rett, leaving us relieved yet still searching for answers.

     In 2016, we moved to Houston, TX, for Texas Children's Hospital's top pediatric neurology team. Steroid infusions targeted the ESES. But then, in late 2016, a sudden sharp regression hit: over two months, she lost walking, purposeful hand use, and developed abnormal breathing. Doctors revisited Rett Syndrome. Further, more comprehensive genetic testing on February 14, 2017, confirmed a MECP2 gene mutation—Dayton has Rett Syndrome. We were devastated but resolved to fight for her.

     Dayton has faced many hospital stays, tests, procedures, medicines, increasing seizures, loss of speech and hand function, and now relies on a G-button for feeding. Her smile still lights up rooms, and her laugh fills hearts. Without words, she teaches everyone around her about love, patience, and unbreakable strength.  We host The Great Rett Shootout because we are Dayton's voice right now, and owe her our everything to help find a cure. She is our hero and inspiration. With your support, we help fund research that gives everyone with Rett Syndrome a fighting chance. Recent breakthroughs like Trofinetide prove progress is possible—we won't stop until there's a cure.

With love and gratitude,
Kent and Amanda, Dayton (12), Taylor (10), Samantha (8), and Alexandra (6)​​