July Warrior

Remy

Remy’s journey with epilepsy began with a dramatic and unforgettable event. All she recalls from the day of her first seizure is a family lunch at her grandparents’ house. She woke up in a hospital bed with her mother crying beside her and her father pacing anxiously.

She has no memory of the four hours between arriving home and the seizure. Her family told her that her body stiffened, she started shaking, and then collapsed, convulsing on the floor. After the seizure ended, she fell asleep and woke up two hours later in the hospital.

The next day, an EEG confirmed the neurologist’s suspicion of epilepsy. Remy was immediately put on 300mg/day of Phenytoin, andis now on 200mg/day of Lamictal. At just 10 years old, she and her family knew little about epilepsy. They were given strict instructions on what to avoid, how to respond to seizures and status epilepticus, potential triggers to steer clear of, and most important - keeping it quiet.

They were assured that she could stop medication once she was older.

Throughout her life, epilepsy brought various challenges and feelings of guilt, pain, and betrayal by her own body.

Remy just wanted to be "normal," missing out on typical teenage activities like going to the beach, visiting coffee shops, or shopping without a family member's supervision due to the fear of seizures. As an adult, she found herself explaining why she couldn't drink, go clubbing, or drive, all without mentioning epilepsy.

With three attempts to discontinue medication, each resulted in a seizure within days of reducing the dosage. In May 2018, during what was supposed to be her final EEG before going off medication, Remy had another seizure.

This confrontation with the reality that she would need medication indefinitely was devastating, leaving her feeling deceived by her body and her doctor, despite having anticipated it deep down.

Remy is a fun-loving, ambitious person who enjoys meeting new people and forming friendships. Epilepsy has taught her that, while she can’t defeat it, she can manage it by listening to her body and not pushing her limits. She doesn’t let epilepsy stop her from living her life, provided she doesn’t overdo things, as seizures terrify her.

As a mother of two active young boys, Remy faces additional challenges. Emotional stress is a significant trigger for her seizures, making it hard to stay calm and relaxed with two cheeky children. Music helps her stay relaxed. Lack of proper sleep, especially when her children are sick, puts her on edge for days, fearing a seizure while alone with them.

Typically, her seizures start as focal seizures and can escalate to tonic-clonic seizures.

Overall, Remy’s seizures are well controlled, and as of 5th October, she will have been seizure-free for one year.

$5 from every tee sold in this collection will be donated to 1IN25