Rare disease is worst kind - East Valley Tribune: Get Out

Rare disease is worst kind

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Posted: Thursday, September 16, 2004 11:11 am | Updated: 5:03 pm, Thu Oct 6, 2011.

September 16, 2004

The news keeps getting worse for Lauren Reed. But she doesn’t know it.

"This little girl sings all the time," said Lynette Hull, a neighbor of the Reed family in Gilbert’s San Tan Ranch. Hull is leading a drive to raise $600,000 in hopes of saving the 3-year-old’s life.

"Whenever I call them, she’s in the background singing her ABCs, singing a song, she sings in the back of the car — and the first thing she’s going to lose is her voice," Hull said.

Lauren was diagnosed weeks ago with Sanfilippo’s syndrome, which will eventually take away her voice and ability to walk. The rare genetic disorder, where sugars accumulate in a child’s cells, leads to developmental delays, organ damage and eventually death, usually as a teenager.

Lauren probably won’t even live that long unless her family can quickly find money for an experimental stem-cell therapy their insurance company is refusing to pay for — and unless the treatment works.

"She’s doing real well right now, but she was diagnosed this week with the worst kind of Sanfilippo’s, so as soon as the deterioration starts, it’ll be a really fast decline," said Lauren’s mom, Carrie.

Insurance provider HealthNet refused Tuesday to pay for Lauren’s treatment on the grounds that it’s experimental, but the company has taken the family’s appeal to the state Department of Insurance for a fiveday review, spokeswoman Susan McLeod said.

Lauren needs to get transplanted cells from her younger brother’s umbilical cord blood before she turns 4 in November.

Dr. Joanne Kurtzberg of Duke University Medical Center said 14 children with Sanfilippo have received the stem-cell treatments there since 2000. Nine have survived and improved; five died of viral infections after the transplants.

The East Valley rushed to the family’s aid even before coverage was denied, giving $35,000 Saturday during a single car wash at Higley High School.

So far, $42,000 has been raised. This weekend, every Redfish, Bamboo Club and TGI Friday’s restaurant in the Valley will collect donations, and next week, San Tan Elementary School, where Lauren goes to preschool, plans a rummage sale.

Fund-raiser

When: This weekend

Where: Tables to collect donations will be set up at every TGI Friday’s, Redfish and Bamboo Club restaurant in the Valley or Tucson.

How to donate: Checks should be made out to the Lauren Sutton Reed Benefit Account, and can also be dropped off at any Bank of America branch or mailed to P.O. Box 2252, Gilbert, AZ 85229

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