Evelyn Hill is the daughter of Ryan and Jessica Jordan of North Charleston, SC. She is nine years old and attends Lambs Elementary.
Evelyn is a free spirited and fun loving young lady with a deep love for animals, especially otters! She loves to do art, ride skateboards, and play games with her family. She is a hardworking fourth grader and loves Music, Art, and especially Science Class.
On Evelyn’s 4th birthday, in January of 2010, we were told she was a healthy and perfect little girl. Just one month later, Evelyn spent the day having fun making posters and playing at the park with her brother when shortly after coming home, she collapsed into a grand mal seizure. She seized for over 20 minutes and was rushed to Summerville Medical Hospital. It took three hours before she could speak clearly and recognize who mommy was again. We were told by doctors that it was most likely a fluke and that she was otherwise healthy and would be okay. While we were hopeful this would be a one-time thing, Evelyn suffered another grand mal seizure just a few weeks later and was once again take to the ER. Several more of these seizures followed and then we began to see partial focal seizures. We were sent to MUSC pediatric Neurology where just three months after her first seizure she was diagnosed with Juvenile Epilepsy.
Evelyn has worked through missing lots of time in school, having to miss out on dance classes and sports as we worked to get control of her seizures and keep her safe. Over the course of the last 5 years she has changed medicines 4 times and dosages 6 times in order to keep seizures as under control as possible. While everything she had to endure was hard, she greeted everyone with a smile and manners at every turn, ever the sweet little lady. In December of 2014, Evelyn celebrated 1 year seizure free, but in March of 2015, began to have partial focals again. As she continues her battle with epilepsy, she has always worked hard to be an advocate and simply just be a kid by never letting anything slow her down.
At 7 years old, Evelyn met the founder of the S.A.F.E. foundation, when her parents asked them to speak for awareness day for her Girl Scout troop. Up until this point Evelyn was terrified to let her friends know about her epilepsy and during this meeting she had a breakthrough. She spoke up about her seizures and joined in the talks about seizure types and seizure first aid. Since that meeting Evelyn has become our little advocate. Despite all she endures, she works hard to spread awareness wherever she goes. In November of 2013, she made her first big move as an advocate when she spoke with the Joint BaseCharleston News Paper about her epilepsy and how to use it to help educate others. In the same month Evelyn, along with her family, helped create Purple Day at her school to help raise awareness. She began taking the steps to use her condition to not just help teach others, but to help other kids know that they, too, are not alone. Since then, Evelyn has been the puck drop kid for the Hockey Heroes For Epilepsy event at the Stingrays' Game and has been the mascot for awareness within her community.
This past year, Evelyn began a home candle-making project with her dad. This project gave life to Purple Rose Candle. In an effort to create a candle that we could use in our own home without causing risky side effects, Evelyn and her dad created a soy-based natural candle that is safe for her and others with epilepsy. What started as a hobby, turned into a full-fledged business in April of 2015. The efforts to launch a business turned to a way to help raise awareness and teach people about epilepsy and about S.A.F.E., as well. Evelyn and her family partnered up with S.A.F.E. and donates 10% of all proceeds to the organization in efforts to help other children like Evelyn. As Evelyn tells it, “ I didn’t know before that other kids had epilepsy too, Ms. Karen taught me that so we should help them too.” Evelyn would come into the mall kiosk location and talk to people about epilepsy and why they should help S.A.F.E. every weekend. The company itself has focused on raising awareness of the cause and getting the word out about S.A.F.E.. Despite still working to get her seizures back under control, Evelyn has stayed positive, fun loving, and eager to be a typical 9-year-old girl. She takes every chance to teach people about her condition but never lets it slow her down!
SAFE Member Spotlight - Evelyn Hill
Christian Shotwell’s Epilepsy Journey
Christian Duane Shotwell was born a healthy and wonderfully handsome young man on May 16, 2003. He didn’t cry, but merely looked around with wonder at this new world! Christian remained healthy and happy without any health complication until one day after his 8th birthday.
On May 17, 2011, Christian was enjoying a Wii game with his younger brother, Eric. During this game, Christian fell victim to a complex partial seizure, during which he was deprived of oxygen. Little did we know, but this was the beginning of a new journey into the world of epilepsy.
Christian went through EEGs, CT scans, MRI scans, and much blood work before being officially diagnosed with epilepsy. It was after the diagnosis that he began treatment with his first anti-convulsant drug. Unfortunately, this drug resulted in a body-wide rash called erythema multiforme with Steve Johnson’s Syndrome on this lips, which landed him right back into the hospital for further monitoring. Throughout this trial, Chrisitan remained happy, strong, and positive. When the seizures began again, they started as complex partial seizures that took a liking to generalizing. A new medication was needed as soon as possible to prevent this severe oxygen loss that was the result of each seizure.
Christian started his new anti-convulsant therapy, which worked great! Throughout the series of MRIs during the next three years, a hippocampal abnormality was discovered on his left hippocampus. Though the scarring remained, Christian (and his family) was blessed with over three years of seizure freedom. Exactly three years and seven months since his last seizure, Christian suffered a large grand mal seizure while at home.
Though epilepsy continues to remain very present, it will not get the best of Christian. He is dreaming of a career in science one day. He is active in the local Boy Scout Troop, his church, and also is an older brother to three siblings that love and worry about him very much. Epilepsy is merely a bump in this awesome journey he is on, but Christian will rise and conquer!
SAFE Member Spotlight - Christian Shotwell