This picture will be used to help us raise money for CURE. CURE is an organization that raises money for epilepsy research. This is an organization that has taught me so much about seizures and has been a real encouragement to me during those dark moments in raising a child with a seizure disorder.
Our goal is to raise $5,000 this year for epilepsy research. 94 cents from every dollar donated to CURE goes back into epilepsy research and that is exciting! Not only that but we desire to raise awareness of this disease. Most people have no idea but epilepsy kills more people than breast cancer. This is a disease that can be cured and we want to be a part of that. We want our story to be heard and we want to help others who deal with this sometimes devastating disease.
Look for more to come, events and donation opportunities, we are going to do great things in honor of our girl.
Here is her story and some of my favorite photos from today.
Sophia was born on September 9, 2005. She was our first child, our little angel baby. Sophia was nine months old when I first recognized that Sophia may be having a seizure. Actually it was her grandmother who recognized it. I thought she was just teething, wincing in pain, I didn’t recognize that those unexplained facial expressions were actually focal seizures. We spent her first Easter in the hospital, EEGs, CT scans, and MRI tests, nothing was conclusive, yet, on a nine month old sometimes that can happen.
During the next three years Sophia had many seizures, many different types of seizures; absence seizures, myoclonic seizures, and tonic clonic seizures. Sophia has tried many different cocktails of medications. We traveled from our small town to larger areas with children’s hospitals and neuro-specialists. Doctor after doctor was mesmerized by our girl. They couldn’t believe with her history that she could walk, talk and function the way she did/does. They warned of us the reality of this disease and prepared us for the worst.
Today, Sophia is a wide eyed five year old. She is sensitive and caring. She is living with epilepsy, and for that we are thankful. She takes daily medication and still has ‘breakthrough seizures’ from time to time.
We understand the heartache and lives that are destroyed by epilepsy and while our daughter has been one of the lucky ones, there is a very scary reality that is constant in our minds.
Join us in remembering those who live day to day with epilepsy and those who have lost their lives to this disease.
Amazing pictures... Thank you Brian Williams Photography!!!
No comments:
Post a Comment