Emma Steinl is fundraising
Epilepsy Alliance of NC: Empower Group Fitness
***Hi, my name is Emma Steinl. I am a Junior at Page Highschool. For my IB CAS project I am hosting a fundraiser for the Epilepsy Alliance of NC. In 2022, I was diagnosed with Generalized Epilepsy. Having Epilepsy is challenging. I am 17 years old and I feel like I have lost much of my autonomy. I have Grande Mal seizures when I am stressed, lack sleep, and when I am not medicated. I have had them at family events and school. Due to recent seizures, I cannot drive, bathe or swim without supervision, and my parents are uncomfortable leaving me home alone.
It has taken time and patience to get my medications correct. The seizure medications are key in controlling my episodes. As long as I take my medications, I should be able to better manage my seizures and my independence will return!
I want other NC kids and adults to have the information and medications needed to control their seizures as well. Prescription anti-convulsants are imperative in managing my Epilepsy. EVERYONE that needs them should have access to them regardless of family income or insurance. Please contribute to the NC Epilepsy Alliance Medication fund so we can help others manage their Epilepsy.
Everyone deserves to live a healthy life!
****FROM an Empower Fitness member/physician in the community:
As a young physician in training, I learned about epilepsy in detail from medical books and from my teachers. As the father of a son with epilepsy, this knowledge now seems grossly lacking and insufficient to explain the human toll of epilepsy. Our son, now 13, might seem at casual glance to be a “normal” young teenager, perhaps a bit shy and slightly awkward, but he would not be picked out in a photo as someone “different.” Anyone spending more than 10 minutes with him and engaging him in conversation would quickly realize that he is definitely different.
Being a caregiver is never easy, not even when done as a team. It is not easy when you’re looking after a loved one with Alzheimer’s disease, someone with heart disease, cancer, bodily injury, or any other ailment. But being a caregiver to someone with epilepsy has it’s unique challenges. It is the random and unpredictable nature of the disease that means no respite from the vigilance and worry that becomes your new baseline as a family. The caregivers in our family are all affected every day, right down to our 7 year old daughter, who routinely saves our son from falling, or notifies us when he has fallen. Our son cannot bathe alone as hot water seems to be a trigger for his seizures, so, most of his showers are with Dad. Food is also a trigger for him, so mealtime means that everyone in the family shares the responsibility of monitoring him. This does not prevent seizures, falls, food spills or bladder mishaps, but together we work to make the events and the mess associated with these events as limited as possible. We’ve been lucky so far and our son has yet to suffer a major injury, but the threat of such an event is ever-present and foremost on all our minds.
This burden is shared by us because we love our son/brother. It is not easy for any of us, and of course, this burden is most heavy for our son, who does his best to get good sleep and follow certain rules that help to mitigate his risks. We are well to do, educated, and are a strong team… and epilepsy still threatens to rule our lives. It is hard to imagine not having a team or resources to help us all through this. It is for those people out there, patients and caregivers alike, who need help that the Epilepsy Foundation can serve as a critical resource. Please help with their mission to help epilepsy families in need.
- K
- M
114 supporters
guidestar.org/profile/56-1011151