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Christina SanInocencio - A Sister's Love Can Change the World
Christina SanInocencio - A Sister's Love Can Change the World PhotoBy Lisa Moss

Christina SanInocencio grew up knowing all too well what it means to have a seizure, but not because she has epilepsy. When Christina was seven years old she watched her younger brother, Michael, have the first of what would be countless seizures. Christina remembers playing with Michael and their older brother and recalled, "The first seizure happened out of nowhere. He was exactly three years old and all of a sudden he started having a seizure; we thought he was having a heart attack. He went to the hospital right then and there and didn't have another seizure for a couple weeks but after the second seizure, that's when it started nonstop." Christina had no way of knowing at the time that she would grow up to form the first organization dedicated to helping families coping with Lennox-Gastaut Syndrome.

Soon after his first seizure, Michael was diagnosed with epilepsy and by the time he was five years old, the family discovered he had Lennox-Gastaut Syndrome (LGS). LGS is a rare form of childhood-onset epilepsy affecting approximately 90,000 people in the United States. It usually appears between the second and sixth year of life and is characterized by frequent seizures, multiple seizure types, behavior issues, intellectual disabilities, regression, and a resistance to medications or therapies.

Because Michael had such frequent seizures, being able to recognize a seizure, identify the seizure type and get help became second nature. "It was so normal in our lives and even as children we were so accustomed to the seizures," says Christina. Her parents were open about what was going on with Michael. Growing up, Christina became knowledgeable about his condition and despite her age, was part of his support network. "My older brother and I very quickly learned all the seizure terms and learned what Michael was dealing with," says Christina. She began her role as a young activist raising awareness as she explained to friends, classmates and teachers what it meant to have LGS. Her earliest memory of raising awareness was in second grade when she wrote about LGS in a writing contest and won first prize. Entering and winning this contest was the beginning of Christina's mission to raise awareness of Lennox-Gastaut Syndrome.

She went on to get a degree in Communications and began a career in television working on several national shows. Her professional experience and desire to do more for families living with this syndrome culminated in a plan to create a documentary about LGS. As she began her work on the documentary, Christina was surprised to find a lack of resources, information and communities available to individuals and families living with Lennox-Gastaut Syndrome. She tried to connect with families coping with LGS and couldn't find them; she turned to Facebook and MySpace and found only a handful of parents. She felt compelled to increase awareness about LGS and the idea of founding a non-profit came to life.

In November of 2007 she enlisted her mother to help form a national organization dedicated to people with Lennox-Gastaut Syndrome. What started as a way to connect individuals with similar experiences has resulted in an organization with an international reach aimed at providing information, support, guidance, research funds and awareness to anyone facing the daily challenges of Lennox-Gastaut Syndrome.

The LGS Foundation is just getting started. Seeing what's been accomplished in just a couple years, my sense is that they'll be around for a long time. One of the more recent projects she is working on is a sub-site, Adults with LGS, which will focus on transitioning LGS children into the adult world and covers topics about residential issues, changes in behavior and what to expect as a parent of an adult child with LGS. Her long-term vision for the organization includes expanding their international presence and having support groups all around the world, raising necessary funds for research projects focused on epilepsy and LGS, developing more programs for families and finishing the documentary that started it all.

Christina had no idea the LGS Foundation would be so well received when she started two and a half years ago, but the families she works with consistently energize her to do more. When asked who inspires her, Christina's answer is simple and without hesitation: the parents who do so much for their children living with epilepsy.

Visit the LGS Foundation Website.

Watch the LGS Video Submitted to the American Academy of Neurology Film Festival.
 
 
 
 
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