Persevering As a Family

Thandi is sharing her daughter Leia's ongoing experience with epilepsy and seizures
Thandi Loney
Parent of a Child with Epilepsy
Tuesday, December 21, 2021

In March 2017, Kurt and I woke up to our worst nightmare. At the time, we didn’t know what was happening, but our 13-month-old baby girl, Leia, was having a febrile seizure.

In a state of panic, and not knowing what to do, we called the paramedics. Every second felt like an hour as we waited for them to arrive. When they did, they told us our jellybean was having a seizure. They gave her rescue medication and rushed her to the ER. Thankfully, the seizure stopped. We both felt so helpless, and there was nothing we could do to stop the seizure. I felt true heartbreak for the first time as my heart was shattered into a million pieces.

After running some tests, they established that she had an ear infection that triggered a high fever, which caused the seizure. We were told that there was a high probability that she would not suffer another seizure because anyone with a severely high fever is at risk of having a seizure. I prayed that this was the case, but three months later she had another one, without the warning sign of an acute fever.

We rushed to the ER again, and at this time the neurologist advised that we put her on anti-seizure medication. She went for six months without any seizure activity. We were told that if we reached the two-year mark of inactivity with regards to seizures, that she would be weaned off the medication.

Thanksgiving of 2017 brought with it another nightmare. Our little girl had a terrible seizure, spanning 40 minutes. We rushed to the ER again and spent some time in the PICU. It was after this seizure that we started seeing more frequent activity. It started with bi-weekly seizures and escalated to weekly seizures.

After countless hospital stays, tests, EEG’s, VEEG’s and MRI’s, my sweet girl was diagnosed with intractable epilepsy. It took me a while to accept our reality, but I swiftly had to because I have a little person counting on me to go to war for her.

We have tried eight different medications, to no avail. None of the medications we tried resulted in seizure control, which brings us to our current situation.

Leia started the medical ketogenic diet in January 2020, in the hopes of controlling her seizures. The last nine months have been a rollercoaster. Initially, we saw improvement but subsequently started seeing more seizures.

Nothing prepares you for this journey. Helplessly watching your child have a seizure is the worst feeling ever. Epilepsy has an agenda, and it robs you and your family of so much.

One thing is certain: we have a princess with the strength of a warrior. She is the true definition of fortitude and bravery. Her fighting spirit shines through daily, and epilepsy will not define her.

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Reviewed by: 
Sara Wyen

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