Support Evaleigh's Fight Against Epilepsy

As a mama who know the struggles & heart wrenching trials of Child Epilepsy, I feel compelled to advocate and help other mamas and families going through similar circumstances. Often times, the expenses that families incur to fight for the best care team, the most accurate diagnosis, and treatment planning can be an unnecessary added stress to take on. Please take a moment to meet sweet Evaleigh, who began showing signs of seizure activity at just 6 months old. Leah, Ev’s mama, has been such an invaluable resource and sounding board for me as my son was diagnosed with juvenile epilepsy in June of 2024. With frequent check in’s via text to see how we are doing, asking how she can help, and even preparing me for what to expect during our own clinical, Leah has been such an incredible and unexpected gift. Please help show Leah and Ev the same kind of encouragement and support as they embark on the next steps of Ev’s seizure journey by donating, by praying & by sending words of encouragement!

At 9 months old, Ev made her first trip to UVA for video monitoring EEG where she was diagnosed with infantile spams and absence seizures. Ev started a medication regime that included 31 days of injections for the infantile spasms. As of today, the infantile spasms seizures are controlled, but she continues to have frequent absence seizures .

Over the course of a year and continued seizures Ev’s mama, Leah, continued her search for answers. A follow up with UVA didn’t yield answers or a care plan that seemed to sustainably offer Ev the quality of life her mama knew she deserved, so she continued to advocate for more and more testing. Over the next 12 months, Ev would have 5 more EEGs including multiple 5 day stays for video monitoring. After that, her UVA care team concluded that there was not much more they could do other than continue different medication combinations to try to control her seizures.

Albeit feeling discouraged, Leah remained steadfast in her search for another team of doctors who would share her strong will and fight to help Evaleigh. A mama’s fight for her children never stops!

Today, Ev continues to have, on average, one seizure a week. Some weeks are worse than others with Ev experiencing up to 3 a week. In September/October of 2023, Leah began having conversations with Dr. Lee at Advent Health in Florida. After reviewing Ev’s case, Dr Lee agreed to see Ev and provide additional treatment options. Leah could finally breath and had a renewed sense of hope! Ev got a special Halloween treat and made her first flight to Florida. The week was full of EEG video monitoring and lots of sedation required testing, but mama managed to squeeze in some fun for sweet Ev including a trip to the beach, and seeing Crayola in Orlando! After a week, Ev was on her way back home with a new plan and updated medication regimen. Unfortunately, Ev continues to have absence seizures, with her most recent one lasting 16 minutes. Anyone who knows seizures, knows that this can feel like a lifetime of helplessness! At this point, Ev and her mama will be flying back to Orlando to expedite the next step of her care plan, which is an evaluation to determine if a surgical brain procedure is the next logical step to help control Ev’s seizures.

Please consider helping ease the financial burden on Ev’s family (medicine, hotel stays, food, airfare, co-pays). Any amount will be a blessing and a tremendous help as Ev continues to fight for a seizure free life!