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  • 17 Years Old
  • Lennox-Gastaut Syndrome

This dapper seventeen-year old young man with an ear to ear smile is Christian. His infectious grin can melt your heart and comfort your soul. He touches the hearts of everyone he meets and inspires others to make a difference. Christian is seventeen years old and attends Dacula High School. He lives with his Mom, Dad and two younger sisters (Cathryn 15 and Ashlyn 13). Christian was born healthy and developed as an infant should, meeting milestones as expected. He was a quiet little guy and didn’t have much to say in terms of babbling or words as he was approaching two years old. He was a late walker, as he started walking around 18 months. That was also about when he started having frequent involuntary breath holding spells. His lips and fingers went blue and he would go limp for 30 seconds or so. This was incredibly concerning and it was happening involuntarily. Christian began having grand mal seizures, drop seizures and breath holding spells on a daily basis. It was a challenge to get these seizures under control, as well as obtaining a true diagnosis. He and his family spent most of their time with neurologists or in the hospital. They were desperately looking for answers and sought the help of a geneticist. Christian was in status epilepticus meaning that his seizures were constant and wouldn’t stop. Doctors had to put Christian in a drug induced coma and he was in the PICU for almost 2 weeks. He was only 3 years old. He was in the hospital for a month and they still needed a way to manage his seizures. They tried multiple medications and a Ketogenic diet. Neither worked. He also had reflux and difficulty swallowing, so it was decided that he needed a G-Tube and a Fundoplication to help with the reflux.

Christian began having grand mal seizures, drop seizures and breath holding spells on a daily basis. It was a challenge to get these seizures under control, as well as obtaining a true diagnosis.

Christian was also diagnosed with Spastic Cerebral Palsy due to his disordered muscle tone and contractures. He endured another significant episode of epilepticus and was hospitalized in November 2013. He spent Thanksgiving in the hospital and wasn’t released until Christmas. After that, he was assessed by a new neurologist, who diagnosed him with Lennox-Gastaut Syndrome (LGS). LGS is a severe form of epilepsy that typically becomes apparent during infancy or early childhood and is most often diagnosed between 3-5 years of age although it took longer to determine that this was another syndrome Christian had. Since then Christian has been on a regimen of six medications and daily supplements which have minimized his seizures. He is essentially nonverbal, but can vocalize some sounds and words including Momma, Dadda, PopPop, Nana and Papa. He also uses sign language with a few consistent signs that he uses to communicate basic want and needs. He requires full assistance when walking and wears AFO braces to help support his feet and legs. He can take a few steps on his own when he’s highly motivated. If he does walk, he tires very easily and can only walk short distances. His home is currently not wheelchair accessible. When he needs help with mobility, his family carries him from room to room. He uses a wheelchair for mobility outside of the home. Christian is such a laid back kid and just goes with the flow. He can be quite the jokester. He loves to be silly and get a reaction out of you. He enjoys looking at pictures of family members and friends. He has a special memory book of photos that he looks through every day. He also loves going on family vacations to the beach and Disney World. He enjoys watching his favorite shows when he’s relaxing. Christian’s favorite place to unwind and be free is his bedroom. That is why Sunshine on a Ranney Day is thrilled to be able to give him a dream room makeover and renovate his bathroom to be accessible. This project will soon be under way and we hope that you will get a kick out of seeing the finished product. This will be a labor of love and we invite you to join us in support of this venture.
Photography by Dinah Sutton Photography
Photography by Sweet Life Photography by Kim