Girl’s rare disease has family scrambling to raise money - East Valley Tribune: Get Out

Girl’s rare disease has family scrambling to raise money

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Posted: Friday, September 10, 2004 9:55 am | Updated: 4:41 pm, Thu Oct 6, 2011.

September 10, 2004

Brian and Carrie Reed have a compelling reason to raise $630,000 in a hurry.

Less than a month ago, doctors diagnosed their 3-year-old daughter, Lauren, with a rare genetic disease called Sanfilippo Syndrome that causes sugar molecules to accumulate in cells. The buildup leads to severe mental retardation, and victims gradually lose their ability to speak, hear and walk. The life expectancy of children with the disease is 14 to 20.

The Reeds want Lauren to undergo a surgical procedure that doctors at Duke University Medical Center in North Carolina have developed that involves transplanting stem cells from a relative. So far, 13 children have undergone the experimental surgery. Doctors at Duke couldn’t be reached for comment Thursday.

Two years ago, ignoring a doctor’s advice, Carrie Reed saved the cord blood from the birth of her son Nathan. At the time, the Reeds didn’t know Lauren was sick. Reed said she can’t explain why she saved the blood, which contains stem cells that could save Lauren.

"I just had a feeling we’d need it," said Carrie Reed of Gilbert.

The Reeds’ insurance company, Health Net, hasn’t decided whether it will pay for any of the procedure. Testing costs $30,000, and surgery is $600,000.

Lauren is fighting the clock. In most cases, the surgery has to be done before age 4, when the disease begins to do serious damage, Carrie Reed said. Lauren turns 4 in November.

"That’s why Health Net can’t mess around," Carrie Reed said.

David Olson, senior vice president for corporate communications at Health Net’s California headquarters, said the company is weighing its options.

"My understanding is that our decision relative to this case has not been made," Olson said.

The Reeds’ friends are holding a carwash, raffle and bake sale to help raise money for Lauren’s surgery from 9 a.m. to 1 p.m. Saturday at Higley High School, 4068 E. Pecos Road in Gilbert.

People wanting to contribute can make checks payable to the Lauren Sutton Reed Benefit Account, and mail them to P.O. Box 2252, Gilbert, AZ 85229.

Lynette Hull, the Reeds’ real estate agent, is heading the fund raising. She can be reached by e-mail at

How to help

What: Carwash, raffle and bake sale fund-raiser for Lauren Reed

When: 9 a.m. to 1 p.m. Saturday

Where: Higley High School, 4068 E. Pecos Road in Gilbert

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