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Six-year-old Gigi (Angelina) Kenney runs for her mother. 54-year-old Gerald Starr walks to get his life back. Each of these Lamorinda residents is engaging in a battle against adversity, pushing their limits and finding the strength to continue to fight. By pure coincidence, they will both be part of the Twilight 5K at the Oakland Running Festival on March 26th.
"When are you going to get better?" Gigi asked her young mother, Yannett Kenney, a few months ago. Unfortunately, there is no answer to that question. Kenney was diagnosed a year ago with dystonia, a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures. The movements, which are involuntary and sometimes painful, may affect a single muscle, a group of muscle, or the entire body. Kenney went from doctor to doctor for a year before someone finally diagnosed the rare disease that was debilitating her. "What would you do if you get cured?" continued the child. "I would walk the Reservoir again," said Kenney, who used to take her daughter there but now uses a walker to move around. So Gigi made a decision - she is training twice a week at the Lafayette Reservoir after school with her nanny and coach Alex Martin, to run during the Twilight 5K and raise money for dystonia research and for her school, Bentley. Across town, at Acalanes High School, Gerry Starr walks on the track every Saturday afternoon. It's been three years now since the engineer and marketing director suffered a massive stroke in his right brain while on business travel in Detroit. The father of two college students and step-father of two teenage boys spent month in intensive care in Michigan and the Bay Area, and then embarked on the day-to-day rigors of endless physical and mental therapy. Since he decided to prepare for the Oakland race, his pace has increased from a one and a half miles in an hour at the beginning of February to two miles an hour a few weeks later. Right after his stroke, Starr could not sit in his bed or eat alone; now, although his left side is still seriously impacted, he can walk with a cane and works daily to get back the motor skills in his left arm. "Two thirds of Gerry's right brain was affected," says Starr's wife Kim, "doctors told me that he would never be able to walk again and that the best solution was to put him in a nursing home." The family fought to get him admitted to a rehabilitation center. His initial prognosis was not good there, either. After weeks of hard work, one of the doctors said before releasing Starr, "I'm so happy when I get to be wrong." "I'm incredibly lucky to be alive," Starr says, "I enjoy a sunny day, going to the movies or eating in a restaurant. It's much better than being dead, and I try not to think about how it used to be." Starr says the support of his wife and family has been crucial to his recovery. Yannett Kenney feels somewhat isolated, suffering from an orphan disease that most people do not understand. "The disease is not degenerative, but it has no known cure," says Kenney, "I have been accused of simulating or even of being crazy, and I do not know anyone in this area with the same condition." Kenney believes she owes the fact that she was finally diagnosed at all to the persistence of her Orinda practitioner, Dr. Mark Reginato. "It can take some people up to 10 years to get a correct diagnosis," she says, "but Dr. Reginato never gave up and insisted on getting tests done until we found out what I had." Kenney receives care from the treatment center nearest to Lamorinda, which is in Orange County. Still in a grieving period, she is caught between denial and trying to act "normal," and facing the reality of the condition that has shattered her life. "I used to be a radio host in Mexico, and then I had my own Spanish teaching school, Mariposa," she says, "I do not know what I will be able to do in the future." She takes great pride and strength in the determination of her daughter. Gerry Starr does not want crowds to come and cheer for him on March 26th as he walks the Twilight 5K around Lake Merritt. His challenge is personal. Starr has many obstacles to overcome before he reaches his goal of self-reliance. His next goal is to find a job or volunteer position. "I am a marketing specialist and feel I have a lot to contribute," says Starr. Gigi's cause has many supporters. "The businesses in Orinda have been very supportive," says her mother, "Republic of Cake and Canetti's Bookshop contributed immediately." There are two websites on which you can find out more information about Gigi's run: www.dmrfevents.org/event.php?407450, for the Dystonia Medical Research Foundation; and Team Bentley can be found at teambentley.dojiggy.com/.
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Lamorinda Weekly, Moraga CA