Hello, my name is Nancy, and I had a beautiful, healthy baby boy 6 years ago.

We named him Elvis. Elvis has always been such an affectionate, sweet boy and was meeting all his milestones.

when he was 3, I noticed he started doing a a small twitch, and I thought that maybe it was just habit that he started doing. It became more frequent, like once a week to 3 times a week. One day, I was watching him eat at the table while I sat at my desk, and I thought, “ Are they seizures? Should I take him to the doctor?" I had no idea what a seizure even looked like. And right at that second, Elvis slammed his head down and hit his forehead on the kitchen table. I ran to him and asked if he was okay and carried him to my husband and said, "I'M TAKING HIM TO THE HOSPITAL! I THINK HE'S HAVING SEIZURES!"

It's been non-stop since 2022. He has tried so many different medications. The first neurologist we went to was a horrible experience. I was with Elvis in the waiting room and Elvis had 2 head drops (seizures) when we were called in to be seen they did a quick 10 min eeg (brain activity scan) and then we saw the neurologist. He was sure what Elvis was having weren’t seizures because none were shown on the eeg. I was so relieved. As we were about to leave Elvis had a big head drop seizure Right in front of the neurologist He quickly turned to me and said “ yes, he is having seizures. Take this medication, here is a rescue medicine you need it. If he goes into a seizure longer than 5 min he can die” I could not wrap my head around all the things he had given me. How can this be happening to my baby? He can die?? What are seizures!?! No information at all. Just handed me a script and a rescue med. we had a terrible experience with that doctor. The lab orders were always wrong, the wait times were insane 4-5 hours. Elvis was then referred to have his first hospital stay at Dell Children’s Hospital in Austin.

They sedated him and did an MRI then hooked him up to an EEG for 3 days to study his epilepsy.

They treated us so nice. We left with a good plan and so much information. I felt good. I forgot to mention that the week we found out Elvis was having seizures is the same week I found out I was pregnant. After we left Austin Elvis had a convulsive seizure and I called 911. By the time they arrived Elvis had squeezed my hand letting me know that he was ok. I broke down so bad. I hated epilepsy. 2023 we took him to see another doctor in Houston for a second opinion. They did another sedated MRI and Hooked him up to an EEG for 3 days.

We left home to start him on a new medication called Epidialex and he didn’t so well with that one at all. I urged the doctor to please stop that medication. Elvis was sleeping all day and he was still having seizures.

We stopped it after a month. Then I noticed that Elvis started declining with his balance and speech. I noticed that he started slurring his words, he could not sit up right he would always slouch to his side.

I told his neurologist everything that was going on with Elvis that I could think of. He got approved for a Vagus Nerve Stimulator (VNS) and they also scheduled a muscle biopsy while he’s sedated for the VNS surgery.

His surgery went great and the device was in place. It’s small Device that goes in his chest and it connects to his vagus nerve and send signals to his brain. It’s supposed to help reduce seizures. We traveled back home from Austin to Brownsville. The doctor recommended we start taking Elvis to speech therapy and occupational therapy also physical therapy. But we reached a point where we just couldn’t afford it anymore. The co pays were so expensive, his medications, traveling to see his doctor, therapies, and Elvis was getting worse

I just didn’t understand how he had his surgery how he was on so many medication’s and he wasn’t getting any better. He reached the point where he couldn’t chew his food anymore Every time he drank a liquid, he would start Coughing. I was worried that he was aspirating every time he would have something to eat or drink. It was August 5th and Elvis was scheduled to be seen September 6th and I told my husband “ we need to leave now!!!” There was no way Elvis was going to survive the way he was declining. We packed our bags dropped off my three girls at my mom‘s house in Houston and we left to Austin with Elvis and went into the emergency room.

we were in the ER and told the doctors everything. They did several test and they admitted Elvis into the epilepsy unit. A speech therapist came to do an assessment and ordered Elvis have an Ntube placed since it was a high risk of aspiration. They hooked him up to do another study of his brain (EEG)

elvis was having up to 500or more seizures a day. The doctors came into our room 2 days later and told us Elvis has a new diagnosis and it’s Lennox Gastaut Syndrome. I felt so mad and confused and just so many questions about what to expect so I can be prepared. How will my son’s quality of life be? Elvis had no expression, he had not cried in months, nothing was funny to him anymore, toys didn’t interest him. I was losing my son. We celebrated his bday on August 8th in the hospital and the staff at Dell children’s hospital made it so special for him.

It is now September 15th and we are still in the hospital.

The doctors and speech therapist agreed that a Gtube surgery would be what’s best for Elvis. He had that surgery done Ausust 20th. He was also started on a Ketogenic diet.

We are now in Rehab trying to help Elvis maintain his balance, walk, talk and even chew. We are no where near any of those. But my hopes are high for my baby and I will help him everyday get better.

I am making this gofundme because both me and my husband have been out of work and the bills are stacking up . I know that this Disease is not going anywhere and we need all the help we can get. I don’t like asking for help from anyone, but I am losing everything I had saved up. I also want to take Elvis out on a big vacation when we get out of here and I want him to have the most fun birthday.

Elvis is so strong and so resilient and I see him trying his best to get better each day. We are all so proud of him. This battle is not over. Even on the ketogenic diet, and taking up to six medication a day, he continues to have seizures. Please help us with medications, outpatient rehab, medical bills and other expenses because of epilepsy. Thank you,

Elviss mom,

Nancy