My Epilepsy Story

Can You Help Us Make A Difference?

Parker-McFadden Family

The past few months have been so busy. School has started for the children, and my husband is back to work nonstop as the Headmaster at the school where Samuel attends. Fall is rapidly approaching, and I have been busy with many things for the organization. One of my friends just had a precious baby boy. He is just perfect and so tiny….You forget how tiny babies are when your oldest just turned 11. Yes, that’s right, Samuel is 11. On his birthday, I posted pictures of him from over the years, and my heart melted. That tiny 5 lb. 5 oz baby that was in the NICU is almost as tall as I am. He has a smile that lights up the world. He has brought about a change in my life and in the lives of others.

I have had the opportunity recently to share our story with many new people, companies, and possible donors. I admit I get a bit choked up each time I share. It stirs up those raw emotions of taking seizure medication for myself and having it greatly impact my son. I get upset as I tell our story, and then the guilt enters my mind again…. Then I think, this is why we have our organization. We will change things for women across the globe living with epilepsy.

Recently, I had the chance to meet face-to-face with the man that lost his daughter to epilepsy last year. I blogged about her in our post, Missed Opportunities. When we met for the first time, we talked about how I recently got married, my children, his family, his children, and the organization. I knew as we sat there we would get to the topic of the loss of his daughter. I must admit, I was dreading the topic of the letter I sent to him. The letter was full of my raw emotions about epilepsy. As we were ending our time together, he thanked me for the letter, and then the conversation continued on the loss of his beautiful daughter. I told myself, “Don’t cry! Put on your game face!” I failed. The tears kept falling as we shared about epilepsy….. My fears were expressed, and he shared his feelings about epilepsy. It was as if I had known this man for years…… Epilepsy had formed a bond with us. A bond that will make a difference in this world for others. This beautiful young girl’s life was cut short and she was taken from her family without warning. All the hopes and dreams these parents had for her were shattered in just moments. Just as my life was shattered from what I thought my life would be like. So many others, like a woman I spoke with recently telling me her seizures had returned, a mother having another baby while trying to manage her daughter’s epilepsy, parents trying to navigate the school system for their child with epilepsy, we are all trying to make sense of what we are to do with the word, “Epilepsy” and how it is shattering lives. I always say, “I know I cannot change what happened to my family, but I can make something good come out of it.” Those words were the same words that were spoken by the man that lost his precious daughter.

At times, I question myself and think, “Are we really going to make a difference? Are we going to get funding? How does one woman with epilepsy change things? How do I get this nonprofit more exposure?” and the questions go on…. Then I talk to my board members on a conference call, and they push me forward. While my husband tells me, “You have to keep going, things will fall in place. This is your passion and your calling.” I try to escape it at times, and then I meet a family or talk to women with epilepsy, and I cannot walk away. My husband shows me an article about a young woman who was married off at the age of 15 or 16 in another country and has uncontrolled seizures. My blood pressure begins to rise, and I start saying, “How can this be possible? Why are women not being helped here and across the world?” My husband sits in the chair while watching me go on and on about the lack of help for women with epilepsy across the world. I look up at him and say, “What? What is it?” He tells me, “So, do you want to quit and give up on the organization now?” I say, ” Well, no, I am just discouraged….” He hugs me and says, “It will work out. So many things have happened in such a short amount of time, and so many doors have been opened. Many great things are to come for you and this organization, Brandy McFadden.” So today, as I write this post, many great things are to come. Our organization will make a difference for ALL WOMEN WITH EPILEPSY across the globe with the help of many people coming together that have a bond like no other. I look forward to seeing where we will be in the next 6 months, 6 years, 16 years, 26 years, and beyond as our family grows to make a difference in the lives of others across the globe.

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Receive valuable content and personal stories from other women and girls just like yourself.

Disclaimer: Education materials on our website offer general medical information based on up-to-date evidence and, when available, practice guidelines. They are not intended for individual medical advice. Please refer to your treating physician to understand how this information may be applied to your care.

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