Amanda Stocchero

When other shoppers see Sandy and Amanda Stocchero walking through Chicago-area malls, arm-in-arm, they probably think the local mother and daughter are just close. They are. But they walk arm-in-arm for a special reason. Amanda has hundreds, if not thousands, of brief seizures every day, some of them causing her to lose muscle tone and fall to the floor. Their touching/walking style enables Sandy to support her daughter when she has a seizure.

Amanda, now 13 and in eighth grade, was diagnosed with epilepsy when she was 8. Her parents had begun to wonder what was wrong with her. The little girl loved school and suddenly was in the nurse's office several times each week, saying she didn't feel well. Sandy and John Stocchero also noticed Amanda would drop off in conversation, saying she forgot what she was talking about. One day, John saw her head drop. An EEG confirmed the epilepsy diagnosis. Amanda began taking medication to control her seizures.

The medication helped, but Amanda continued to have seizures. Two years after her diagnosis, the frequency increased significantly. Her drop seizures last only a second or two but are incapacitating. Amanda had to give up her beloved cheerleading and dance lessons. One year later, she began using a wheelchair at school to protect her from injury.

Sandy "discovered" Mayo Clinic when she accompanied her sister and niece to Rochester, Minn., for the niece's medical condition. Sandy describes the experience as "an awakening."

"It is like no other place I have ever been," she says. "The care is extraordinary, the staff extraordinary, the entire organization is extraordinary!"

Sandy decided to take Amanda to Mayo Clinic.

"She deserves the very best care in the world, and we think that's where it is," says Sandy. "We had been fighting epilepsy for several years and were frustrated. We needed to explore other options."

Physicians evaluated Amanda and gave her parents a list of next steps — the ketogenic diet and medications — to try. The family tried each, but none lasted longer than a few months — the drop seizures returning each time with a vengeance.

The last recommendation was a surgical procedure called corpus callosotomy. The surgery is appropriate only for people who have severe seizures that are generalized — not originating in one part of the brain — and that result in falls. The procedure involves separating the nerve fibers that connect the two halves of the brain. The corpus callosum is the large fiber bundle that connects the two sides of the brain. The corpus callosotomy may prevent the rapid spread of seizure activity from one half of the brain to the other, reducing the number and severity of seizures and related falls and injuries. The surgery, which has an approximate success rate of 75 percent, does not cure epilepsy or completely stop seizures.

Amanda had a corpus callosotomy in August 2004. The procedure has not provided a significant reduction in Amanda's seizures.

"We took a shot and it didn't work," says Sandy. "I was initially devastated that the surgery didn't help Amanda, but it was worth trying. We just have to keep going until we find the next thing that might help."

Amanda's case is considered unusual because her seizures remained unresponsive to extensive trials of anti-epileptic medications and surgery. Doctors note that, through it all, her attitude about life remained positive.

Ever the optimist, the girl took the surgery in stride.

"God gave me the seizures because he did not know who else to give them to," says Amanda. "So I will live with what he gave me."

Amanda is back to the business of being a teenage girl — signing and dancing, shopping for clothes and shoes, eating junk food and striving for independence. She loves dogs of all kinds, especially her own special dog and close companion, Snoopy, a daschund. She dreams about going to college to become a kindergarten teacher.

Amanda did have one of her other dreams fulfilled. The Make-A-Wish Foundation granted her a wish because she has a life-threatening condition. She chose to meet chef Emeril Lagasse.

"When Amanda was on the ketogenic diet, she started watching the Food Network and yearned for all her favorite foods she could not eat — especially chocolate," says Sandy. "She took a shine to Emeril Lagasse. We flew to New York to meet him and watch a taping of his show. Amanda's brother Scott, 16, went with us. The trip was a thrill for all of us."

Sandy stays focused on the next step in treatment for Amanda's epilepsy.

"I stay in touch with the doctors and am confident we will be back at Mayo Clinic in the not too distant future," she says. "You see the Mayo Clinic mission statement is lived by everyone who works there — whether they provide patient care or not — and in everything they do. They compassion they all showed for my daughter has touched me more than they will ever know."