Answers for Wayne

Most of you know me as Natalie, but one of my favorite boys knows me as NaeNae!

Wayne started having seizures at 3 years old. During a hospital stay at UNC he showed a clean MRI and EEG. It is only by the grace of God that his cousin Landon captured a seizure on video! This video was shown to doctors and they agreed to start him on anti seizure meds. The meds worked wonderfully with the occasional dosage having to be upped due to growth! Fast forward 5 years! In the winter of 2023 family started to notice a change in Wayne, he was spacey, he was clumsy, he just wasn’t himself!!! Finally his mom, Allison, convinced the doctors at UNC to have another hospital stay with MRI and EEG! Although his MRI looked beautifully this time his EEG ran crazy, showing Wayne having 100’s of seizures a day! Doctors were shocked at what they saw. The EEG readings were/are consistent with LGS, Lennox-Gastaut Syndrome. Lennox-Gastaut Syndrome is a severe epilepsy syndrome that develops in young children and often leads to lifelong disability. Nobody is born with LGS. It develops over time. LGS is a rare disease (approximately one person in every 2,000).

About 50,000 people in the United States and 1 million people worldwide have LGS. While there is no cure for LGS, there is a hopeful path forward! That’s where you come into play!! My hopes is to raise enough funds for Allison and Wayne to receive a second opinion! Allison is a single mom of 3 boys! She works tirelessly to ensure they have everything they want and need! The last several months have been HARD for her, and as her older sister my job is to help in any way I see fit! Our first step is to start with an online second opinion with Bostons Children’s Neurology. That visit alone is over $1,000 and isn’t covered by most insurances! If you can, donate so we can continue to try and give Wayne the best help and life we can! If you just can’t donate, then PRAY! Because I’ve witnessed it, there is so much power in prayer! Thank you all -NaeNae❤️