Saturday August 6th, 2022
Pembroke, ON
Registration: 9:30am Walk Start Time: 10am
Start Location: Pembroke Marina Gazebo
Registration $25
*Can’t make it it person? Join virtually and walk anywhere, anytime Saturday August 6th!
Join Melissa & Natasha in their efforts to raise awareness regarding epilepsy in their community. They have organized this walk for individuals living with epilepsy, so they feel less alone.
From Melissa Rolfe, Event Organizer:
“I have two children Lincoln and Kinsley. My daughter Kinsley (8) has a diagnosis of epilepsy. When Kinsley was an infant, there was concerns around movement with her arms and legs. We later discovered she had misdiagnosed infantile spasms. When Kinsley was 4 year she had her first tonic clonic seizure. After an EEG and an MRI Kinsley was diagnosed with epilepsy that was caused by a rare genetic condition Subcortical Band Heterotopia. Shortly after her first seizure Kinsley started having multiple seizures and I had to learn very quickly how to manage a little girl with drug resistant epilepsy. Days suddenly became very unpredictable and plans often changing due to seizures. Over the last 4 years, Kinsley’s seizures are uncontrolled despite many medication changes, and the Keto diet. Kinsley never has a seizure free day and has up to 50 seizures a day. She suffers from different types of seizures including tonic clonic, atonic, and complex focal seizures. She has had many ambulance rides, hospital stays, and this year the added diagnosis of Lennox Gastault Syndrome. Epilepsy does greatly affect Kinsley’s quality of life; her school day and extracurricular activities are often interrupted by seizures. Yet, despite all of the challenges Kinsley is one of the happiest people. She loves high fiving everyone she meets and her smile brightens every room she enters. She loves laughing, twirling and dancing.
I created this event so Kinsley and other epilepsy warriors feel left alone and for a chance to raise funds for epilepsy research.
Raising epilepsy awareness is so important to me. Inclusion begins with education. One must educate others around them to fight against existing stigmas. Prior to Kinsley’s diagnosis my knowledge of epilepsy was so narrow and I had little knowledge around the challenges individuals with epilepsy face daily. It is also important to me that my daughter is proud of who she is and not be ashamed of a diagnosis that she has no control of. I want to teach her to use her voice and advocate for herself and her needs.
Finding a cure for epilepsy means everything for me. It would mean that my daughter would no longer suffer. My daughter would not have to live in fear over when the next seizure would come and my daughter could participate in activities without being interrupted by seizures.
From Natasha, Event Organizer:
My name is Natasha. I am 37 years old and have epilepsy as a result of a rare genetic condition called Subcortical Band Heterotopia (which really means I have a double cortex). This double cortex causes me to have seizures. Some days I can have multiple seizures. Other days, none at all. Most of my seizures occur without warning. I was first diagnosed when I was 14 years old and I am still hopeful for a cure for myself and others.
I think it is very important to increase awareness about epilepsy. If people have a better understanding of the condition there would be less of a stigma associated with having epilepsy. Unfortunately it can be scary for some people to witness someone having a seizure. This is probably because they don’t understand what is happening and what they should or should not do if they are in the presence of someone experiencing a seizure. Symptoms of seizures can vary significantly which can make it difficult for people to determine what is happening if they are not aware that someone has epilepsy.
To find a cure for epilepsy would be amazing. Medications or surgery can help some epileptics to become seizure free. But there are many people with epilepsy, including myself, that have not been fortunate to find the right medications to eliminate their seizures. Surgery is also not an option for some forms of epilepsy. But, we cannot give up hope.
Sponsorship Opportunities
Melissa is looking for prizes for a raffle! If you are interested in donating a product or service to A Walk With Epilepsy Warriors Raffle please get in touch with Melissa.
