Genevieve LaGrow's Christmas Story
The symptoms began in early 1991. Craig and Kim LaGrow's 19-month-old daughter Genevieve collapsed and didn't walk for three weeks. When she did, it was with tremors in her hands and legs. She began falling down often, and she constantly pointed her toes at strange angles. By early 1998, eight-year-old Genevieve could no longer walk at all.
Of course, at the first signs back in '91, the LaGrows had gone to their family doctor for answers. Getting none, they went to a paediatric neurologist, to another neurologist, another paediatrician. Still no answers. One physical therapist dismissed her symptoms as psychological. According to one pediatrician, she'd simply grow out of whatever it was. No one could tell the LaGrows what was wrong with their child, and she was getting worse.
In 1997, Genevieve finally received a diagnosis: Dystonia, a rare disorder with no known cure. The LaGrows were terrified. But they were also baffled — and angry — that during Genevieve's seven years of illness, no one could properly diagnose her.
"We felt powerless, overwhelmed, doomed almost," says her Mom, Kim. "Doctors who were purported to be the 'best' — heads of pediatric neurology — these guys were supposed to KNOW."
So they turned to the Internet … and found hope. After some online research, they discovered the Dystonia Medical Research Foundation's Web site, where they were able to read about Dystonia for the first time. They found out about drugs and treatment. They found support in newsgroup discussions alt.support. Dystonia. They found — at last — a reason for optimism. But by February 1998, Genevieve's crippling symptoms had still worsened, and the LaGrows became increasingly frustrated by having to rely on doctors who seemed overworked and uninformed.
One day, while checking in at http://web.archive.org/web/20001208231500/http://start.earthlink.net/AL/Track?url=http://www. Dystonia-foundation.org, Craig LaGrow learned about a small conference in Seattle for Dystonia patients and medical professionals. It was a long shot, but he booked the flight, feeling he had no other choice.
At the conference, he sought out the keynote speaker on Dystonia, Dr. Susan Bressman, a specialist from New York, and described his daughter's symptoms. Dr. Bressman immediately referred Genevieve to a doctor in California and suggested a possible treatment.
On May 11, 1998, the LaGrows wheeled Genevieve into the hospital to receive the new medication. Less than 24 hours later, she walked off her school bus on her own.
"Never give up" is now the LaGrow family motto. And Kim has advice for other parents: "Use the Net. It gave us opportunities we would have never known about otherwise."
Today, we are happy to report, Genevieve is healthy. She's a pretty typical fourth grader with a pretty miraculous story. Bright, happy, and active, she loves soccer, swimming, playing basketball with her brother — and the Internet. She likes getting (and answering) email and wants to use the Web to help others with her condition find a cure.
