It wasn’t by chance that Landon and Lexi Donahue named their firstborn Elaina Grace, for it has been by the grace of God that their daughter’s battle with Rett Syndrome has brought awareness to an area where only a few knew about the rare genetic disorder that affects brain development, resulting in severe physical and cognitive impairments. Ironically another child, Emma Grace, participated in last year’s event with her mom, Leah Rogers. Both girls not only share a diagnosis of Rett Syndrome but also share the same middle name, Grace, which means “goodness” and “generosity.”
The Rett Run last year was started by this local family in hopes to bring awareness to this complex neurodevelopmental disorder that currently has no cure, but has brought out the goodness of others and the generosity of the small town of Checotah.
“Elaina Grace wasn’t quite two years old when doctors diagnosed her with Rett Syndrome and she turned four in March. Unfortunately, there are no doctors that even treat this disease in the state of Oklahoma,” Elaina’s mimi Mindy Whittle-Hayes stated. “So our family has to go out of state for any type of treatment. Thankfully we have had an awesome healthcare advocate who has pushed for Elaina to be seen by Rett specialists at Rocky Mountain Rett Clinic in Aurora, Colorado, on Aug. 13. We will arrive early in the morning and stay all day while Elaina gets to see a neurologist, a GI specialist and more.
“She recently had a scope which showed her EoE (Eosinophilic esophagitis) is really bad now with inflammation which leads to difficulty swallowing or getting food stuck in the throat. She absolutely cannot have anything dairy. She also has a hiatal hernia that they will have to watch, but she is in all her therapies, physical, occupational and speech, to help as much as they can.”
In 2020, the Rett Syndrome Research Trust successfully completed a three-year, $33 million strategic research plan entitled 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 Syndrome—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 know the future most likely holds more hospital stays and doctor visits, but we are hopeful of new treatments and breakthroughs in the future. Though it’s been a difficult road to walk down with our grandchild, we have been overwhelmed by the thoughtfulness and support of our community and friends who have literally come running to help us in any way they can.
“We have two raffles for Elaina Grace, a Twonight Stay at White Oak Hideaway and a Deep Clean by Lavender & Louise for one top to bottom cleaning of a residential home. Plus we have had a wooden swing donated and more.
“Amazingly we set out on a mission a year ago to bring awareness to this disease. Today more people understand it and hopefully more scientists can work together to find a cure for it. We hope to continue to share Elaina Grace’s journey and want to encourage the community to come out and support the next Elaina Donahue’s Rett Run & Walk scheduled for Saturday, Sept. 20 at the Checotah Sports Complex. Registration will open at 7:30 a.m. and the race will begin at 9 a.m. with I:40 Race Services. Early Bird price is $25 for the 5K and $20 for the Fun Run until July 31 and that includes your tshirt.
The family wishes to say a special thank you to the City of Checotah for being the lead sponsor for the event. To be a sponsor, please reach out to Mindy Whittle-Hayes at mindydeannwhittle@ icloud.com or text her at 918-6177458. All proceeds go towards Elaina’s healthcare expenses.
