Alexa Rose fights Cortical Dysplasia

20/11/2025

Don’t miss our Seizure First Aid Training TOMORROW from 2:30–4 PM!
A little knowledge can save a life! Email rita@efcst.org for the Zoom link. 💜

20/11/2025

20/11/2025

I wish it was available sooner. My daughter would benefit from this new monitor.

16/11/2025

14/11/2025

💜💜💜💜💜SUDEP 💜💜💜💜💜

SUDEP is when a person with epilepsy passes away suddenly and unexpectedly, and no other cause of death is found. It’s rare, but real, and something many people with epilepsy are never told about. Researchers believe SUDEP is usually related to breathing problems after a seizure, heart rhythm changes, and the brain not fully recovering after a tonic clonic seizure. It can often occur during sleep or when the person is alone. No single cause fits every case, and research is still ongoing.

Who is at higher risk?

Anyone with epilepsy can be at risk, but the risk is higher for people who have uncontrolled epilepsy, have generalized tonic clonic seizures, have seizures at night, and who frequently miss medication doses. The risk increases each year by a percentage of .5%-1%.

How to reduce the risk!

Take medication on time every day, treat night time seizures seriously, avoid seizure triggers as much as you can, create a seizure safe sleep setup with camera monitors, night time supervision, consider seizure alert devices, and work with a neurologist/epileptologist to improve control at all times.

Why it matters!

Many people with epilepsy say they were never told about SUDEP until years after diagnosis…or not at all. Talking about it increases safety. Education can save lives. Awareness can protect our community.

13/11/2025

Our warrior woke up with a few seizures this morning 😥. She isn’t getting any good sleep lately. She is so irritable for the pass couple days. Her anger is increasing.

After talking with the Dr. Jason Hauptman yesterday and taking it all in about the brain surgery. We are all in. 50-60% seizure freedom is better then 15% seizure control with medication, 8% Sudep risk is Alexa’s percentage right now. He ordered a Petscan and an another MRI before surgery.

Did you know that in severe epilepsy cases like Alexa’s Sudep rises 1% every year that seizure control isn’t obtained 😱🫣. That’s a very scary factor for us. Not one Dr has ever revealed that to us until now. They emphasis on monitoring her in her sleep and making sure she doesn’t suffocate on pillows or stuffed animals at night time but never to be aware that her percentage is increasing every year 😥.

13/11/2025

12/11/2025

12/11/2025

When my son started having seizures just 30 hours after he was born, an MRI a few days later showed us that he had hemimegalencephaly - a massive brain malformation that affected one side of his brain. It was huge, and there was no doubt in anyone's mind that it was there. Although I felt