Born with a rare disease called tuberous sclerosis complex, 4-year-old Grace Ramos of Modesto takes monthly trips to see doctors at Children's Hospital & Research Center Oakland.
The genetic disorder causes noncancerous tumors -- also called tubers -- to form in different parts of the body, such as the brain, heart, kidneys and lungs. Her brain tumors triggered mild seizures when she was a baby and she was diagnosed at 5 months old.
The seizures, lasting 15 to 30 seconds, are more serious today and can strike at any time, requiring her mother, Lindsay Anderson, to watch her constantly so she doesn't fall headfirst into a wall or coffee table.
Children from the Northern San Joaquin Valley who struggle with rare or severe medical issues often are referred to Children's Hospital Oakland, which will open a Modesto specialty care center in July.
The Oakland hospital served more than 800 young patients last year from Stanislaus County and Southern San Joaquin County. It is leasing a newly constructed building in the shopping center at Dale Road and Snyder Avenue to bring specialty medicine closer to area patients.
The 4,500-square-foot center will be one of the hospital's "Network of Care" sites, which typically are placed in areas with a growing population and a lack of pediatric medical specialists. The hospital has other sites in Oakland, Brentwood, Walnut Creek and Larkspur.
"As we looked around the region, the area with the most need seemed to be Modesto," said Mary Dean, vice president and chief development officer for Children's Hospital Oakland. "We talked to a lot of physicians in the area and they said there was need for more specialty services than were available locally."
The $2.7 million center will start scheduling patients July 1 to see physicians who specialize in childhood diabetes, neurology, orthopedics, psychiatry, gastroenterology, pediatric surgery and sports medicine.
The physicians will examine and consult with patients. The center will have ultrasound and other diagnostic imaging services, and the list of services will expand based on need, Dean said.
The hospital previously sent specialists to Modesto to see patients in shared office space. The children's hospital also has an pediatric oncology clinic at St. Joseph's Medical Center in Stockton.
Disorder affects 50,000 in U.S.
Grace has a fairly severe case of tuberous scleroris and is a regular patient at the hospital's Jack & Julia Center for Tuberous Sclerosis Complex.
The genetic disorder occurs in one in every 6,000 births and affects about 50,000 people in the United States. Many have developmental delays and serious medical issues, while in others the effects are so minor they don't know they have the disease.
Grace requires annual scans to monitor the tubers on her brain, heart and kidneys, as well as consultations with a variety of specialists.
Anderson hopes the Modesto center will allow her to reduce the 150-mile round trips to the Oakland hospital.
She borrows her mother's car to drive Grace to Oakland. At other times, they have gotten a ride to the Pleasanton BART station and taken the train to Oakland.
Anderson gets on the phone when there's a need to adjust the daily medications Grace is given to try to control the seizures. She hopes she can have the diagnostic imaging and blood draws done at the Modesto center, just two blocks from their home.
A panel of surgeons will decide in a few months whether Grace is a candidate for surgery to remove a part of the brain where the seizures originate. If she is a good candidate, there is a 75 percent chance the surgery will control or reduce the seizures without impairing her function, said Dr. Candida Brown, a neurologist and medical director of the Jack & Julia Center.
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