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    Sutter Children's Center, Sacramento

    Bronte - A Family Dedicated to Epilepsy Research

    Bronte -
    Bronte - A Family Dedicated to Epilepsy Research

    When Bronte was three months old she had her first seizure; that was nearly 16 years ago. Over the first few years of her life she had almost every kind of seizure possible and sometimes had up to 10 grand mal seizures per day. She saw specialist after specialist and tried many different medications. Sometimes the medications would reduce the intensity of the seizures, but she was never seizure free. And they took a toll on Bronte as she grew from an infant to an active toddler, and into adolescence. Eventually she was diagnosed with Lennox-Gastaut syndrome, a very rare and severe form of epilepsy.

    Bronte’s family tried everything they could to help control her seizures so she could have a normal life. At night, her mother Beth would hold Bronte to her chest so she could sleep without seizing. They tried different diets to control the seizures, which left Bronte’s small frame dehydrated and fragile. The family became an advocate for the special needs of kids with epilepsy to ensure Bronte got the education she deserved and also started sharing Bronte’s story around town to raise the awareness of epilepsy.  

    Over time Bronte’s grandmother Mary Lou became very active in philanthropic efforts to fund epilepsy research, working with the researchers at Sutter Neuroscience Institute and UC Davis Medical Center. When they first met years back, Edie Zusman, M.D., FACS, medical director of adult neurosurgery at Sutter and epilepsy researcher with UC Davis, and Mary Lou were very impressed and encouraged about each other’s dedication to raising awareness and finding a cure for epilepsy.

    “When Mrs. Sordi first contacted me several years ago, she was very clear on what she wanted - a cure for her granddaughter Bronte..." say's Dr. Zusman, Bronte Epilepsy Research Laboratory founder and former director.

    Over the years many new discoveries have been made in the way epilepsy is detected in treated. Dr. Zusman and the team of specialists at UC Davis made strides in identifying the medications that worked best to control Bronte’s seizures, but there were still there. The family dreamed of a day Bronte would be seizure free, and Mary Lou and her husband Chris founded the Bronte Epilepsy Research Foundation in recognition of their granddaughter and have since raised more than 1.2 million dollars for epilepsy research.

    In 2008 Bronte was referred to Michael G. Chez, M.D., medical director of pediatric neurology and pediatric epilepsy at Sutter Neuroscience Institute. Dr. Chez put Bronte through a series of tests at Sutter Medical Center, Sacramento to help identify the source of Bronte’s seizures. First they started with a standard EEG, they also tried EEG video monitoring, and a high dose valium suppression. They found a change in her early onset EEG pattern and then decided to try invasive monitoring on Bronte in hopes to pinpoint the source of the seizures. The invasive EEG was effective in showing that not only was Bronte’s seizures originating from a centralized area in her brain, but that the area was safe to operate on.

    “We went from 15 years of non stop seizures and seven different neurologists telling us her seizures are uncontrollable, all over the brain and that there is nothing that can be done to great news that Bronte did have a chance at a normal life,” said Beth.

    Bronte was scheduled for surgery in January to remove a portion of her right frontal lobe. Because of the data from the EEGs, Dr. Chez, Dr. Zusman and nationally recognized pediatric neurosurgeon Samuel Ciricillo, M.D., FACS, were encouraged that surgery would benefit Bronte’s condition – but whether it was just lessening the severity of the seizures or completely getting rid of them would be something only time would tell.

    The four-hour surgery performed at Sutter Memorial Hospital by a team of neurosurgeons and neurologists went according to plan. Bronte had to learn to walk again, talk again and regain her strength due to the nature of neurosurgery – but she was in high spirits. And following the surgery, she didn’t have any seizures for weeks. Now her seizures are limited to less than one per night and most nights are seizure free (before she would have four to six seizures per night).

    According to Dr. Chez, he has high hopes for Bronte. Her seizures have dramatically reduced in number and intensity, which has had a positive impact on Bronte’s behavior and alertness. Reduced seizures may mean medications can eventually be reduced.

    And the Bronte Epilepsy Research Foundation is still fighting for epilepsy. Mary Lou and her Chris have partnered with the Ferrari Club of America, Ferrari of San Francisco, and Niello Maserati of Sacramento to organize the Drive-a-thon - Epilepsy Awareness Event in May 2009.

    Learn more about Sutter Neuroscience Institute’s Epilepsy Program.

     

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