The first Elaina Donahue’s Rett Walk and 5K Run will take place this Saturday, Sept. 28 at the Checotah Sports Complex. The Rett Walk/Run will be hosted by the City of Checotah and 1-40 Race Services. The Walk/Run will start at 9 a.m.

“We’d love to have everyone join us Saturday at the Checotah Sports Complex,” Jay Hayes said. “It’ll be fun for all ages as we raise awareness for Rett Syndrome, which our granddaughter Elaina was recently diagnosed with, as well as all special needs children in general. We will have vendors, food trucks, bounce houses, face painting, a fire truck, a corn hole tournament or more.

“Our good friend Rusty Beaver with Horsepower Nutrition will be hosting a small car show with cash prizes for 1st, 2nd, and 3rd place. Plus there’s no entry fee. Anyone interested needs to contact Rusty for more information.”

Hayes’ granddaughter was a little over a year old when doctors confirmed that she had this rare genetic disorder that affects brain development, resulting in severe physical and cognitive impairments.

Rett Syndrome is a devas- tating neurological disorder that causes severe physical and mental pain and disability in 350,000 children and adults around the world. It robs its victims of speech, movement, and hand use and often causes seizures, breathing abnormalities, extreme anxiety, digestive and cardiac problems. Rett’s is caused by a random mutation of a single gene and strikes approximately 1 in 10,000 births, mainly females. However, Rett’s has been proven to be reversible in animals and more research is needed to help the hundreds of thousands of girls and the small number of boys who struggle with this disorder.

While it has been extremely hard on Elaina’s parents, Landon and Lexi Donahue, it has driven her grandparents, Mary Whittle and Hayes, to search for answers and to learn more about this disease and a possible cure.

In 2020, the Rett Syndrome Research Trust successfully completed its three-year, $33 million strategic research plan, Roadmap to a Cure. The achievements of Roadmap to a Cure are numerous and they significantly advanced six priority approaches that target the root cause of Rett’s—gene replacement, gene editing, MECP2 reactivation, RNA editing, RNA trans-splicing, and protein replacement. Understanding this progress has brought them to an exciting new phase of the research called CURE 360, attacking Rett Syndrome surrounded from all angles. Through CURE 360, RSRT is accelerating the six approaches while simultaneously ensuring that the research incubated at RSRT moves into biopharma. This is a critical step for propelling lab science to clinical trials and to changing the lives of those who suffer with the disorder. Their hope is the cure will come from one or more of these strategies.

“As we watch Elaina’s disorder progress, we are heartbroken,” Whittle said. “The future most likely holds many hospital stays and visits. Unfortunately, Oklahoma doesn’t even have a doctor who treats Rett’s, so we have to travel out of state to see a doctor. We know we are looking at a hard road but we have set out on a mission to bring awareness to this disease so hopefully they can find a cure someday. We hope to share Elaina’s journey and want to encourage the community to come out and support her.”