When Jesús had his first seizure, at age nine, we were concerned, but definitely not surprised. Jesús would be our third child at Casita Copan with epilepsy, a condition he shares with his biological mother. His first seizure was not very shocking, but his second and third caused us to rush to the hospital in San Pedro Sula – a four-hour trek on winding roads full of potholes – to the closest neurologist.
As I stood in the emergency room next to Jesús and watched his small body being overtaken by this condition that even doctors can’t fully explain, I felt completely helpless.
I had my first seizure at sixteen. I remember waking up on the floor of my high school sewing class, thinking I was still dreaming. My tongue swollen, my head throbbing, I couldn’t remember the names of the familiar faces that were staring at me with wide, nervous eyes.
For me, seizures have not been debilitating and I lead a healthy life. I am incredibly lucky. But they are still life-altering interruptions. Personally, seizures have meant losing my driver’s license for a year, under-performing at work because of the intense side effects of a certain medicine, being unable to accept a job I wanted because there wasn’t health insurance, giving up on my dream of being in the Peace Corps. They have also meant fear – the constant nagging “what if” that makes it so difficult to trust the present moment.
But for many others, epilepsy is not just an interruption. In a place like Copan Ruinas with no hospital and no public health options for serious conditions like epilepsy, many people who suffer from epilepsy become town pariahs, labeled as crazy, drunk, or “possessed by demons.” Jesús’s biological mother, Maria, who had seizures since she was a little girl, lost custody of her children when the police witnessed her having a seizure in the streets. For Maria, a young woman from a very poor family, effective epilepsy treatment was never an option and so she dropped out of school, has been unable to hold a job, and is unable to take care of herself or her children.
At Casita, we spend about $200 a month on epilepsy treatment for two children and one adult (above-mentioned Maria). Now we have one more child to add to this list. We are committed to finding treatments that don’t just control seizures but that also don’t cause excessive side effects that can greatly diminish their quality of life. We also need to find a way to take our three Casita kids to the neurologist regularly – that means trips to San Pedro Sula, yearly EEG exams, and the costs of these visits – on average about $80 for a consultation.
Our wish for the children of Casita is that they can lead healthy lives and not be held back by medical conditions. Knowing their diagnosis is half the battle. We always have to be prepared for the unexpected, and while their symptoms are controlled, we never know when someone might relapse.
You can help us make sure that we are always prepared for a medical emergency with any of our kids, whether they are experiencing a seizure, have an accident, or get sick. You can donate today and indicate in the “notes” section that the donation is for our emergency medical fund. With your help, we can be ready to act and provide the quality medical care that all our kids deserve.