Our Story begins in Minot, ND where our little girl, Dayton Gail Shirley, was born on March 27, 2013 to Kent and Amanda Shirley. We were stationed at Minot Air Force Base where Amanda was a Captain and Nuclear Missile Operator in the US Air Force and Kent worked in the oil and gas industry. Six months later work moved us to Colorado where we would spend the next 3 ½ years. Dayton was progressing well and everything seemed normal. Her walking skills had always been a little behind but she was soon running around with her new preschool friends and learning new words (she had about 20 in her vocabulary by 18 months). It was around 22 months when everything started to change. We noticed her milestones were starting to lag behind and she wasn’t really using her words anymore. Dayton then started having uncontrollable outbursts and would routinely bite her hands, pull out her hair, or bang her head against hard objects. She was in unbearable pain it seemed. It was heartbreaking for us as new parents trying to console our daughter and realizing nothing we did seemed to help. 

We immediately began to look for answers but doctors seemed just as confused as we were. Initially, she was diagnosed as autistic but that never felt just right. It was also discovered that she had a rare form of epilepsy called Electrical Status Epilepticus during Slow-Wave Sleep (ESES), whereby she had no outward seizures, but seizure-like spike/wave activity would consume her brain over 95% of her entire sleeping periods, causing her to essentially as doctors put it, “start over every day”. She was assigned a neurologist at Colorado Children’s Hospital and he went through a laundry list of additional possibilities which included Rett Syndrome. Rett didn’t seem right either because after researching it, her mannerisms at the time just didn’t fit. After a long wait we were finally approved for genetic testing. The results came back negative, she did not have Rett Syndrome. This thrilled us but still left us with many questions, most importantly, what was happening to our little girl and how could we make her better?

In 2016 we decided to leave Colorado and move to Houston, TX. Texas Children’s Hospital has one of the finest pediatric neurological departments in America. There, they attempted a battery of steroid infusions to combat the ESES. Although she was now completely non-verbal, since she could still walk and use her hands, they remained unsure what was behind it all. Then suddenly, as if a switch turned off, a sharp regression hit and over the course of 2 months Dayton lost the ability to walk, total purposeful hand usage and developed abnormal breathing patterns. Again we were told there was a possibility of Rett Syndrome. We didn’t understand because this had already been ruled out. As it turns out the original genetic testing was insufficient so they requested we do further testing. On February 14, 2017 we received the news that Dayton did in fact have Rett Syndrome as confirmed by a mutation of the MECP2 gene. We were devastated but quickly came to the realization that we were in for the fight of our lives and Dayton needed our strength. 

Every parent has hopes and dreams for their child. Our immediate hopes changed but our long term dreams for her never did. We just knew we’d have to take a different and much longer path than most. Dayton has taken this unimaginable life she has been dealt head-on and with incredible strength and courage. She has spent countless nights in the hospital, has had so many tests and procedures we’ve lost count, has been pumped full of steroids numerous times, had seizures, lost all ability to speak and use of her hands, and her survival is almost exclusively dependent on being fed through a g-button. Fortunately, through intensive therapy and peer interaction, she has fought back and won some of her ability to walk again! She still requires a wheelchair for most of the day, but through all of this, she still has a smile that will light up any room and a laugh that will fill your heart. Without being able to say a word she has taught us and so many around her about life, about love, about patience, and about fighting with everything you have. We are hosting this event because, for now, we are Dayton’s only voice and we owe her everything we have to try to find a cure. She is our inspiration and our hero! We will never be able to thank you all enough for the support you have shown our family and for contributing to our cause which will give all children with Rett Syndrome a fighting chance in this big amazing world. 

With love and gratitude,

Kent and Amanda, Dayton-10, Taylor-8, Samantha-6, and Alexandra-4