Not too many people get to see 4-month-old Lily Barnett--the child suffers from a disease where a rouge germ may kill her, so family members and friends receive a newsletter with pictures of the blue-eyed child and stories about how she is doing.

But three people were recently in her home to give Amy Barnett, Lily's mother, a $1,000 check to help with medical expenses.

Lily, who has Spinal Muscular Atrophy, a disease related to Muscular Dystrophy, appears to have become Shelby County's adopted child, and mom Amy Barnett will have to send out so many newsletters for Lily's admirers that she may have to resort to a printing press, rather than her home computer printer.

To help Lily, residents have donated almost $2,000 collected from factories, convenience stores and offices.  On Thursday, that amount jumped another $1,000 when the check came from the former Michael Long Charities, now Shelby County Community Charities.

The organization also is beginning a trust fund for Lily, dubbed "The Lily Trust" by board member Larry Ethington.  The fund will act as a clearinghouse for all those who would like to help the family with its expenses via donations, and donations to the new fund will be tax deductible, said Shelby County Community Charities president Gary Walls.

All of the money will go to Lily.

After presenting Amy with the $1,000 check "on behalf of the people of Shelby County," Walls told the mother, "As you get the bills in, let us know.  We'll go from there and pay the people directly."

Holding wide-eyed Lily, who was looking at the new people in her house with a cocked head, Amy said, "I'm overwhelmed.  I never expected anything like this."

Amy and her husband, Brian, have been fighting a lonely battle against insurance companies and doctors to try to get Lily preventative treatment before her disease, SMA, becomes so severe that she will succumb to it.  SMA causes a weakening of the muscles to where babies can't cough or eat.  Eighty percent of infants diagnosed with the disease die before age 2.

Those numbers, however, are ignored by Amy and Brian.  They discuss the progress in treatments and research.

"No parent wants to lose their child and you're willing to do anything to keep them here with you.  As long as she's happy, we'll do whatever it takes, whatever we have to sacrifice, as long as she smile," Amy said.

Through internet chat rooms founded by parents, the couple learned of a doctor in Newark, N.J. who actually treats the children.  One thing he won't do is use a tube for inhalation because the tube could cause infections a SMA baby is too weak to cough up.

The Barnetts have made one trip to Newark and are going again next week for Lily to get a feeding tube implanted in her stomach before she becomes too weak to eat.

Other things the family has been fighting for is a mask to help Lily with her breathing, and a seven-series cold-and-flu shot that costs $1,000 a shot.

'They Don't Have To Die'

The family has been denied these medical measures because insurance companies and doctors say to parents with SMA babies "take them home and love them," Amy said, until they die.

"They don't have to die," Amy said Thursday to Walls, Ethington and Bernice Dixon, Shelby County Charities' treasurer, about SMA children.  "There's a lot of kids who have this.  Hopefully what we do will help other people."

Recently, Humana, the Barnetts' insurance company, has received many phone calls from Shelby County residents who have learned about Lily's story.  The company did just approve the feeding tube operation and the $1,000 immune shots, but deductions are high.

Until the new Lily Trust Fund, the Barnetts were ready to take out loans.

Shelby County Community Charities was founded six years ago to assist Michael Long, a boy, and his family, fight brain cancer.  Since then, the 18-member board has quietly contributed to families in crisis, either by helping children and families in abusive situations or families with sick little ones.

The story of Lily and her parents is "exactly the thing we want to help with," Walls said, "and why we were formed."

Ironically, both Amy and Brian had volunteered for Shelby County Community Charities' annual fund raiser.  He played in the free band and she worked the concessions.

The couple never imagined they would one day be recipients of the organizations' good will.

With the help of the charity and those who give to it, the Barnetts hope quiet, little Lily maintains a comfortable quality of life--until a cure is found.

"You never know with SMA when there will be a cure for it," Walls said.  "It could be today, tomorrow.  As long as there is hope, we need to be there for Lily."


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