Hospital names center for Pleasanton girl Hospital names center for Pleasanton girl (April 16, 2004)

TSC Clinic is one of 13 in U.S.
by Dolores Fox Ciardelli

Little 3-year-old Julia Steenman's struggles are benefiting other people with the same rare disease.

Julia has Tuberous Sclerosis Complex, a genetic disorder that results in tumors that can grow in any organ of the body, explained her mother Janine Steenman.

"Julia has had over 3,000 seizures in her young life," said her mother. "She is mentally delayed and has significant developmental delays. She just took her first steps before her third birthday."

Last week Children's Hospital Oakland opened its Jack and Julia's Center for Excellence for Tuberous Sclerosis Complex, named after Julia Steenman and Jack Leal, who was diagnosed at 10 months old when he had a 45-minute seizure.

"Jack is one of the lucky ones," said Janine Steenman. "He is developing normally despite the presence of brain, heart and kidney tumors. Jack is a rare story in this Tuberous Sclerosis community."

"Julia was 6 months old when she was diagnosed," she said. "First she was misdiagnosed. They thought she had heartburn."

In her short life, Julia has had brain tumors, kidney tumors and heart tumors, said her mother. She attends Donlon Elementary School's special needs program for two hours each day to work on her fine motor skills. "I still have to feed her, and she is on a special diet to help control her seizures," said Steenman.

Steenman credits the Ketogenic Diet - high fat, high protein - with Julia going from taking 17 pills and having 20 seizures per day to one pill and three to four seizures a day. "For breakfast, it's bacon and eggs with butter and applesauce. She loves her meals," said Steenman. "I'd recommend it for anyone who has epilepsy. I'm a big advocate of this diet."

Steenman and Shannon Leal, Jack's mother, spearheaded the effort to open the TSC Center at Children's Hospital, which sees patients every Tuesday. There are only 13 clinics around the country, said Steenman, and only one west of Dallas.

Although many people have not heard of TCS, Steenman said, it occurs in one in 5,000 births, which makes it as common as Lou Gehrig's disease or cystic fibrosis. More than 500 people in the Bay Area are known to be effected, she noted, with countless others either misdiagnosed or undetected.

The two women, their families and friends are organizing a Comedy Walk-a-Thon at Jack London Square on the last Sunday in May. "It's very important to us to bring awareness of Tuberous Sclerosis Complex, and to announce the grand opening of the TSC Clinic at Children's Hospital Oakland," said Steenman.
Laugh, walk, help a good cause

What: Comedy Walk-a-Thon/official announcement of TCS Clinic opening When: 9 a.m., Sunday, May 30 Where: Jack London Square Program: Walk at 9 a.m., enjoy family comedy show at 10:30 a.m. Cost: Raise $100, by asking 10 friends to donate $10 each to your walk to raise money for TCS clinics and research Information: Janine Steenman, 249-1302

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