Win a Ride. Support Bronte Epilepsy Research Foundation

It was early morning almost twenty years ago when Bronte had her first grand mal seizure at my mother's house. Needless to say, we were terrified. We had no idea of what was happening to her. We raced her to the hospital. I was driving, tears streaming down my face, my mother holding Bronte, talking to her, trying to stay calm. We were living a nightmare. It took a lifetime getting to that hospital. She was diagnosed with epilepsy in January of 1994 and was placed on Phenobarbital.

At the tender age of five months, my daughter, Bronte Alexis, was having practically every kind of seizure, grand mal, absence - you name it. Sometimes she would stiffen up; other times she would suddenly drop her bottle from her hands. Unfortunately, her small, growing body didn't respond well to the medication. It made her very hyper and she couldn't sleep at night. The only way I could get her to sleep was to let her sleep on my chest. She seized constantly throughout the night and mommy's chest was her only comfort place. Bronte also had constant colds because of her fragile immune system. During the winter I had to sleep sitting straight up in bed so she could breathe. My daughter slept on my chest for four years.

When Bronte was two and a half years old, she went through a two month spell where she had 10 grand mal seizures a day. A new doctor took her off Phenobarbital and started her on Depakote. He diagnosed Bronte with Lennox-Gastaut Syndrome, a severe form of epilepsy. Her childhood would be characterized by frequent, hard-to-control seizures and mental impairment. We were told Bronte might never talk.

We decided to try the ketogenic diet to help control her seizures. After the very first day, Bronte's seizures stopped completely. But the diet dehydrated her, so she was always in the hospital. Every night after dinner she would just cry and cry because she wanted something else to eat.

After two years she seemed to be doing well on the diet, and we hoped we could wean her off the Depakote. We started taking her off the medication and she immediately started seizing constantly. I thought it was too much to have Bronte on both the ketogenic diet and so much medication, so we took her off the diet and the doctor put her back on Depakote.

Bronte had grown into a beautiful five-year-old. She was having fewer seizures, but she still had absence seizures about every hour. We needed something to control them. We flew from our home in Sacramento, Calif. to see a doctor in Minneapolis who referred us to a doctor at Stanford University. The doctor added Lamictal to Bronte's cocktail, which did decrease her "absence" seizures.

Besides the constant dehydration, I think the ketorgenic diet had another side effect on Bronte; she went through a "food thing." She wouldn't eat anything. She went months and months just eating rice. She was shaky and fell down a lot because she was so weak.

When Bronte was six years old, everything started again. The grand mal seizures were back and she started getting sick again - high fevers, vomiting and lost motor control. She would be sick and in bed for weeks at a time. From September 1999 to May 2000, she was in school for two weeks, then home for two weeks. It was a terrible cycle.

The doctor added Topamax to Bronte's medications to control the grand mal seizures. She lost her appetite after that and started to starve herself. The only thing I could feed her was Pediasure.

Bronte's health is only one of the battles we've fought with her. We've had to fight for her to get the education she needs. Bronte entered the school system when she was three years old. She was in a special education class and had an Individualized Education Plan (IEP) for three years. Yet as she was nearing kindergarten, she hadn't achieved any of her goals and hadn't learned one new skill. She desperately needed an aide in school. I knew my daughter could learn. It had taken us five weeks to learn on task at home, but she could do it. She was such a quiet little girl and I believed she was just being overlooked in the classroom.

The school district was a constant battle. Despite many IEP meetings and four doctor's reports indicating Bronte's need for an aide, the school district wouldn't provide one for her. Several neuro-psychological evaluations were performed on Bronte, and my mother and I spent hours on the phone trying to convince the school district that Bronte needed an aide. We finally won the fight and Bronte got an aide in her kindergarten class.

We believe that more research into a cure for epilepsy is the only hope for Bronte, and for others whose days are filled with seizures. Now Bronte's seizures are a part of our lives, but we hope that one day that won't be the case.

My daughter is such a special girl. She loves to rub faces and hug other people. She has been through so much but she keeps fighting, and we keep fighting for her.

Beth

Chris and Mary Lou Sordi are the Grandparents of Bronte, and Mary Lou is the C.E.O. of the Bronte Epilepsy Research Foundation. Her enthusiasm and “can-do” spirit are irresistible. She puts that natural energy into raising money for epilepsy research, at Sutter Neuroscience Institute and UC Davis Medical Center and School of Medicine — a subject to which she is deeply connected.

Diagnosed with Lennox-Gastaut syndrome, a very rare and severe form of epilepsy, Bronte is susceptible to seizures every couple minutes without medication. While no cure exists for Lennox-Gastaut syndrome, medications can help but their toxicity may lead to more brain damage. While Mary Lou and Chris are delighted with Bronte’s progress under the guidance of Sutter Medical Foundation and UC Davis physicians, they want more for her. They want to conquer epilepsy. The key is research — the kind being conducted by both Sutter Medical and UC Davis and the kind that takes enormous funding.

Over the years Mary Lou has sponsored many fund raising activities through Golf Tournaments, Car Rally’s, Musical symphonies, and now a rare automobile display. The combined total of funds raised through the Bronte Epilepsy Research Foundation, for Epilepsy Research and Treatment is over $1,400,000, with an additional $1,800,000 in Research Grants. Every penny of these funds is forwarded to Epilepsy Research Divisions at both UCD Davis, and Sutter Neuroscience Institute.

Q: What is Epilepsy?

A: Epilepsy is a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain. Normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain and all other parts of the body. Seizures are a symptom of Epilepsy. A seizure starts when a tiny cluster of brain cells begins to emit rapid, highly rhythmic, synchronized, and repetitive electrical discharges. The malfunction may remain localized to a small area or, with seconds, like a ripple in a pond, involve the entire brain. The result is a seizure, the form of which may range from a brief staring episode or sudden drop attack to a massive, prolonged, life-threatening convulsion.

Q: What is the impact of Epilepsy during childhood?

A: The severe Epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.

Q: How many people are affected by epilepsy?

A: Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

Q: What is Lennox-Gastaut Syndrome?

A: Lennox-Gastaut Syndrome (LGS), which Bronte has been diagnosed with, is a severe form of Epilepsy. There is no cure for this syndrome; therefore, freedom from seizures and the possibility for normal development remains in hands of researchers. The nature of the seizures, plus the drug toxicity and the continuous electrical abnormalities often reinforces the brain dysfunction and produce a severely handicapped child.

Q: What is the purpose of the Bronte Epilepsy Research Foundation?

A: The Bronte Epilepsy Research Foundation funds a series of seminars, research conferences, and collaborative lectureships. It provides a forum bringing teams of nationally and internationally recognized scientists and physicians together in Sacramento to share research knowledge on a regular basis. It cultivates the exchange of ideas among the best and brightest colleagues, and educates the next generation of Epilepsy experts. The research program is supported by UC Davis Medical Center and the Sutter Health Neuroscience Institute.

Q: What can people do to help Bronte and others who suffer from Epilepsy?

A: Your generosity will provide much needed financial support and hopefully you will also be able to spread the awareness for more attention to finding a cure for this disorder. Come to Zinfandel California Cuisine in Gold River, CA on Sunday, September 8, 2013 from 11am to 3pm, enjoy a delicious brunch and purchase one or more raffle tickets for a chance to ride in one of three beautiful exotic sports cars. If you can’t make it to the event, please contact me directly by phone (916) 965-5510 or email at bronte123@pacbell.net. For more information about the Bronte Epilepsy Research Foundation, visit our website at www.bronteepilepsyresearch.org.