Brian Barnett grew up in Shelby County.  His wife, Amy, has lived here for 15 years.  Despite the couple's familiarity with Shelby County's residents, they hardly expected the outpouring of support the community has given to their sick baby, Lily.

Since an article was written in The Sentinel-News last month about 4-month-old Lily, who is afflicted with Spinal Muscular Atrophy, Shelby Countians have offered hundreds of prayers for the chubby-cheeked child and given nearly $2,000 that will be used for her medical expenses.

The generosity has been a light in the couple's dark struggle with doctors and their insurance company.

Because 80% of babies diagnosed with Spinal Muscular Atrophy die from it before they turn 2, those in the medical profession act "almost like they're waiting for her to die," Amy said.  "I know that's a cruel thing to say, but she's not just a statistic.  She's a person.  She needs just as much of a full life as anybody else does."

Through their nickels, dimes, dollars and checks, Shelby County residents concur with the Barnetts about Lily's right to treatment.

At Short Stop Food Mart in Simpsonville, manager Nonnie Stinnett taped the newspaper article onto a Plexiglas box and added a sign asking patrons to donate any change to help Lily.

"It caught my eye," Stinnett said of Lily's story.  "She's just a pretty baby and to have to go through all that, it brings tears to your eyes."

Babies with SMA, a disease that weakens muscles and affects 6,000 babies a year, become too frail to cough and often die of pneumonia.  They also lose their ability to suck and can't eat.

The Barnetts know all about the debilitating disease, which does not yet have a cure.  Their first baby, Nathan, died of SMA before he reached the 4-month-old mark.  Amy remembers he was unable to eat.

Nathan, however, was not diagnosed with the disease until it was too late for preventive measures.

When Brian looked at his daughter and talked about the generosity of Shelby County residents, he goo-gooed to Lily and said, "We expect the outcome to be different now."

The couple expect a different outcome because of advances in research, including medicines that cap keep affected children alive longer.  Lily is also receiving treatment at a specialized clinic in Newark, N.J., and the Barnnetts are taking measures to help before Lily is too sick for treatments.

Unfortunately, the Barnetts' insurance company, Humana, has been slow to approve or has simply denied preventive treatment.

"They don't return my phone calls," Amy said.  "It's just real frustrating."

But, Short Stop gave the Barnetts $63 after just two weeks of collection and have another pot of money ready for the family, Stinnett said.  They roll the donated coins, exchange them at the bank for dollars and place the greenbacks in the safe in an envelope that reads "baby's money."

"You would be surprised at the young kids who drop money in the container," Stinnett said.  "High school kids come in the morning, get their drinks and breakfast and drop their change in there.  They never put it in their pockets."

Help is 'unreal'

To Amy and Brian, the generosity is "unreal".  At Katayama, where Brian works, employees read the newspaper article and collected $1,100 in a manila envelope passed around the factory.  Amy proudly holds up the somewhat worn envelope.

"We thought it would be a couple-hundred dollars," Amy said, "and we were thankful for that."

But when they counted out the dollars and it tallied to $1,100, "we were incredibly shocked at how much they collected."

A former Shelby County High School mate of Brian's, Becky Collins, is taking up her own collection.  As of last week, the couple learned she had netted $600.

"That'll go a long way towards surgeries," the mother said and kissed Lily--a bright-eyed child who doesn't look as though she has a disease--until a close look and one notices Lily can't move.

The near $2,000 collected will help pay for a specialized operation in Newark for a feeding tube.

Lily also is the beneficiary of other local help.  Board members from Michael Long Charities, established to help a young man fight a brain tumor, contacted the Barnetts and offered help from attorneys on their board.  Also, state Rep. Gary Tapp was touched by Lily's story and will use his clout to influence the family's insurance company.

"I saw his number on Caller ID," Amy said after the representative called.  "I said, 'Oh my God.'  It was a very welcome surprise."

Since the support began, Humana approved treatment it formerly denied, like a preventive flu shot that would have cost $1,000.

While the Barnetts are overwhelmed by money and help, the couple most appreciates smaller tokens--and especially the prayers.

"People have offered to do anything," Amy said.  "One woman called and said she had no money, but she has a baby about Lily's age.  She said, 'If you need clothes or anything, I have clothes.'  That was probably what touched me the most."


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