Support Chandler's Fight Against Epilepsy

Ella “Chandler” Rogers is a beautiful, vibrant, energetic 5-year-old. She loves her sisters, playing with Play-Doh, going to the park, baby dolls, playing t-ball, and everything else a little girl her age likes to do. She was living the life of a typical 5-year-old until July 10, 2024, when she was suddenly diagnosed with epilepsy.

Her seizures began without warning. What started as a normal day spent with family on Jekyll Island quickly turned into any parent’s worst nightmare. Chandler was on the beach playing with her cousins when her mom and grandmother noticed seizure-like symptoms and rushed her to the nearest ER, where she was transferred by ambulance to Wolfson’s Children’s Hospital in Jacksonville.

In Jacksonville, she stayed confined to her room on an EEG machine for 8 days as the seizures continued and became more frequent. After lots of bloodwork, a CT, MRI with sedation, and other intensive testing, Chandler was sent home with seizure meds but still experiencing around 4 seizures a day.

Once at home, Chandler had 17 seizures on just the third day. After taking an additional seizure medicine called in the next day by her neurologist, Chandler broke out in a horrible head-to-toe rash. Her mom rushed her to her pediatrician, who agreed it was time for a 2nd opinion. That day, Chandler had 30 seizures while at SGMC awaiting transport to Atlanta. Once en route, she had to be given 2 rescue medications in the ambulance to stop the seizures.

Within the first few days, Chandler’s seizures became so severe her doctors had to give her Versed, which requires you to be placed on the ventilator to assist with breathing. She was sedated and on the ventilator for a total of 16 days. During that time, she was having subclinical seizures which can only be seen while wearing an EEG monitor. Most mornings, the doctors would come in to let her parents know how many seizures she had the night before—some days she wouldn’t have had any, and some nights she would have as many as 11.

While on the ventilator, Chandler contracted pneumonia. After being taken off, she continued to have seizures. She was in the PICU for a total of 5 weeks. Once stable enough, she was moved to the inpatient rehab unit where she learned to walk, eat, drink, and do other normal things again over the course of another 5 weeks with the help of physical therapists, occupational therapists, and speech therapists.

During these three months, Chandler’s mom remained by her side during the week, struggling with the anxiety of the unknown and being away from her other children. Her father would come visit on the weekends, bringing her sisters with him to visit each time. During the week, her father attempted to maintain a normal routine for their other children while working 8 to 12 hours a day to support them. Being separated was so hard on everyone, especially their youngest child, Caroline, who is 3. Chandler and Caroline are best friends and had never been separated before. Caroline struggled and still struggles being away from her mother for any length of time, as any 3-year-old mama’s girl would. These weekends at the hospital always went by so fast. Sunday goodbyes were so hard and full of tears from everyone.

Now back at home, Chandler’s battle is far from over. She is currently on 5 seizure medications that she takes throughout the day and continues going to PT, OT, and speech therapies twice a week and must frequently travel to Atlanta for specialized medical appointments.

The next step in Chandler’s treatment is for doctors to perform an SEEG, where they will implant 15-20 electrodes in her brain to pinpoint the origin of her seizures. In order to do this, they must lower her seizure medicines enough that she starts having seizures again. Next, they will do a mapping of her brain to see if the area they are coming from will affect her motor functions if removed. She will not be able to leave her room during this time and will be there 1-2 weeks. She will possibly have surgery again while there to remove the spot on her brain that is causing the seizures if the mapping reveals it’s okay to do so.

Her mother and father are still grappling with the trauma of those hospital months, reliving the anxiety and helplessness of watching their daughter have over 400 seizures. Her parents are naturally extremely nervous about reliving those months while Chandler is inpatient for her SEEG. Please pray for their anxieties and that they will be able to remain strong for all their children.

I’m creating this GoFundMe for two reasons.

One - To spread the word that my niece needs prayer more than anything. We want so bad for her to be free of these seizures so she can be herself again and firmly believe that is the Lord’s plan for her. Chandler loves the Lord and prayed just as much as her parents did while she was in the hospital and continues to do so several times a day.

Second - To help offset some of the expenses that come with traveling from Valdosta to Atlanta for appointments and surgeries. They have put a lot of wear and tear on their vehicle traveling to Atlanta so much that it is starting to give them problems and needs several things fixed on it that they cannot afford to do right now. Being in Atlanta for days or weeks at a time adds tremendously to their normal everyday expenses.

Third - To raise Epilepsy Awareness. While at the hospital, we were told by nurses and doctors that they are seeing more and more cases of unexplained seizures in young children. This alarming fact not only affects my family but many others and cannot be fully prevented with medicines.

If you’ve made it this far, thank you so much for reading this and for caring about my family. Please, please keep Chandler in your prayers and for traveling mercies for my sister and her family as they are on the road so much. We believe the Lord hears our prayers and that He will heal our Chandler!

If you would like to Donate to Katie Lynn & Chris directly, their Venmo is katielynnr