McEwen: Courage, hope and walk for a cure

The Fresno BeeOctober 9, 2013 

Lauren Merrell, a student at UC Davis and inspiration for the Fresno Hydrocephalus Walk, has endured 13 surgeries in her young life.

SPECIAL TO THE BEE

Lauren Merrell always kept it a secret. Only her family and a couple of her closest friends knew why she missed so much school her junior year at Bullard High School.

She had eight brain surgeries that fall and spring — each involving the replacement of shunts that drained the fluid building in her brain. She had hydrocephalus — diagnosed when she was 4 months old — and she didn't want the world to know.

Merrell kept the secret going at Fresno City College and the University of California, Davis, where she is a senior majoring in psychology. Even when she helped out at the hydrocephalus fund-raising walk started by her mom, Cheryl, and Kelly Fjelstrom, also the mother of a child with hydrocephalus, Merrell passed herself off as "just a volunteer."

If you're wondering why I am writing about Merrell on pages customarily reserved for opinions about government and politics, it's because of an email she sent me in March explaining how she had been embarrassed about having hydrocephalus — which is commonly known as "water on the brain."

"It was a big step for me, but I've recently become more open about it," she wrote. "I realized that it's not something to be ashamed of. The Fresno Hydrocephalus Walk was started because of me, and I should be proud to be a part of it.

"The majority of people have never heard of hydrocephalus before, yet it is affecting many lives. This condition doesn't have a cure yet, but that's what we are working towards!"

Who could resist a story as good as this one or turn down someone with such strength and enthusiasm?

Even after three more surgeries while in college — she's had 13 thus far in her young life — Merrell considers herself lucky. A self-described "type-A personality," she graduated from Bullard with a 4.2 grade-point average. She volunteered for six years at Children's Hospital Central California, stopping only because of her studies at UC Davis, where she is on the rowing team and counsels jail inmates in Woodland.

"I am fortunate to be where I am," Merrell said. "I don't have a lot of disabilities, but others do. There has been little progress in treatment over the past 50 years, and I am hoping that in my lifetime there will be."

There is no cure for the disease, which is defined by the Hydrocephalus Association as "an abnormal accumulation of cerebrospinal fluid within cavities of the brain called ventricles."

It was during Merrell's tough junior year of high school — much of it spent at Children's Hospital — that Cheryl, with little else to do but worry and pace the halls, decided that battle was bigger than her daughter's and her family's fight. She contacted the Hydrocephalus Association.

"I was just losing it and thinking they were going to have to put me in the nuthouse," Cheryl said. "I just went online to find out what we could do."

Over the past five years, the walk at Woodward Park has raised about $100,000 for research into a cure. Last year's event drew 439 walkers and raised $28,274.

I asked Merrell how it feels to let loose of the secret.

"It was a good decision," she said. "My friends in Davis were shocked that I didn't tell them before. They're saying they are proud of me. I almost wish I had said something earlier. All those years, I should have realized how fortunate I am."

 

Bill McEwen is The Bee's Editorial Page editor. He can be reached at (559) 441-6632, bmcewen@fresnobee.com or @fresnomac on Twitter.

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