Family turns disease into support for others

June 1, 2009 7:08:27 PM PDT
A Danville couple is hoping to turn their daughter's terminal illness into something positive for other kids.

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"She started walking before she was a year, she started talking quickly, she was always on the go," Chelsea's mother Linda Gerber said.

Young Chelsea Gerber had everything going for her.

From early childhood and well into her early teens, the Danville girl was bright, active, very healthy and extremely happy.

"She was very happy to meet new people, she never had a harsh word for anybody and she was very intolerant of others picking on someone or making fun of others," Chelsea's father Howard Gerber said.

All was well with Chelsea, until she turned 14.

"April 15th of eighth grade, she had a seizure at about 8:30 in the morning, right in front of the school," Linda Gerber said.

Not long after Chelsea had that first seizure, her parents brought her to Children's Hospital Oakland, where neurologist Dr. Suzanne Davis made a devastating and rare diagnosis.

Chelsea has a genetic disease called Lafora, the most extreme and deadly form of epilepsy.

"When we diagnosed her, we had no other patients in our practice with the same diagnosis," Dr. Davis said.

Davis initially suspected Lafora after comparing test results from Chelsea's brain with those done months earlier.

"Her EEG had changed, it was more abnormal and so we suspected then she had some progressive form of epilepsy," Dr. Davis said.

Lafora slowly diminishes the brain's cognitive abilities. It is so rare, there are only about 200 confirmed cases in the world, five of them in Northern California. It is also terminal -- most young patients will die within 10 years of diagnosis.

"As the doctors keep reminding us, it's much more painful for you than it is for her, because she's really not aware," Howard Gerber said.

Today, Chelsea is 18-years-old. Instead of celebrating her high school graduation, her disease has progressed to a point where she needs full-time care at home.

"The first couple of years was horrible because we saw all of her function slowly slip away," Linda Gerber said.

Now, Chelsea rarely speaks, but her family can still get her to smile and interact with them. Together, they are determined to make the best of a dire situation.

To that end, the Gerbers have created a Web site called Chelsea's Hope. Besides Chelsea's story, it contains those of other kids in the Bay Area and across the country who have Lafora. The goal is to provide families with a network of support that did not exist before.

"There is not only no money, but there's no community; there's nothing like the American Cancer Society or Heart Association to help rein you in and connect you as a group," Barbara Goldsmith of Chelsea's Hope said.

Besides providing community, Chelsea's Hope is committed to raising funds for Lafora research, including genetic and stem cell programs at the University of California, Los Angeles and in Toronto.

"In the future there's going to be treatment through genetic research, but we're still a ways off yet,' Dr. Davis said.

The Gerbers know any medical breakthrough will come too late for their daughter, but they are committed to making Chelsea's legacy one that ensures a future for other kids with Lafora.

"My hope is that this becomes a common word and that people say 'I've heard of that, and I want to help,'" Linda Gerber said. "Because healthy children should not have to go down this path. It is abnormal for parents to watch their children die."

LINK: Chelsea's Hope Web site
ABC7 EXTRA: Watch Laura Anthony's complete interview with Chelsea's parents, Howard and Linda Gerber

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