SNELLVILLE - When Valerie Floyd was diagnosed with Hurler's syndrome, doctors told her parents, Ricky and Mary Jane, to take her home and love her until she died.
It was 1982, and Valerie, who was about 10 months old, wasn't expected to survive to see her 10th birthday.
But she did. In fact, Valerie celebrated 27 birthdays before she died Saturday.
"God intervened so many times in Valerie's life," Mary Jane said.
After Valerie was
diagnosed with Hurler's syndrome, or mucopolysaccharidosis I (MPS-I), a nurse gave Ricky and Mary Jane the name of a doctor in England who had performed some bone marrow transplants, the only available treatment at the time for the inherited metabolic disorder. Without the doctor's phone number or address, however, the Floyds didn't know if they'd be able to contact him.
When they heard a preacher they knew would be traveling to England, the Floyds asked him if he could try to find the doctor. Mary Jane wrote a note filled with questions for the preacher to pass along if he was successful in tracking down the doctor.
As it turned out, the preacher was staying with a man who worked with the doctor the Floyds were trying to contact. That doctor referred the family to the University of Minnesota, where bone marrow transplants were being performed in the United States.
So, at the age of 3, Valerie became the third recipient in the United States to receive a bone marrow transplant for Hurler's syndrome. The procedure wasn't a cure, but it could stop the progression of the disorder.
Hurler's syndrome is among a group of genetic metabolic storage disorders in which the lack of an enzyme affects various organs and tissues, including the brain, according to the National Marrow Donor Program Web site. Enzymes are proteins that play many roles, including metabolizing - or breaking down - substances in the body. In metabolic storage disorders, the body lacks an enzyme needed to metabolize a substance, such as a sugar. Instead, the substance builds up in the body and causes damage.
Hurler's syndrome occurs in about one of every 100,000 babies born, the Web site states. Ricky and Mary Jane, who both carried the recessive gene that causes Hurler's, had a one in four chance of passing it along to a child. Valerie was their third child, after Richard and Karen. Their youngest daughter, Diana, also had Hurler's and died when she was 18 months old.
"There's nothing good about having a child with Hurler's - at least that's what you think," Mary Jane said. "You take life as it is, and you learn to appreciate it."
Mary Jane said Valerie was joyful and happy. Ricky said Valerie was loving and "didn't know a stranger."
"She was a very caring person toward others," Ricky said. "She always thought of others before herself."
Valerie always wanted to send flowers or balloons to people who were sick, Mary Jane said. And if she couldn't do that, Valerie would start working on a hand-made card.
Valerie stayed busy, too. She enjoyed watching movies. One of her favorites was "Annie." She had two different versions of the film, and she watched it two to three times a week, sometimes every day, Mary Jane said.
Now Ricky and Mary Jane say their house is quiet - too quiet. Mary Jane said she misses Valerie's help in the kitchen. Valerie would always stir the cornbread mix and pour the sugar in the pitcher when her mother was making tea.
"We're thankful we had Valerie," Mary Jane said. "It was an honor and a privilege to be her parents."
The family said they are also thankful for all the support they received from friends - financial and otherwise - throughout Valerie's life.
Valerie endured many medical procedures, including the bone marrow transplant, carpal tunnel surgery, stapling for knee deformities, repair of a diaphragmatic hernia, a spinal fusion surgery and corneal transplants.
"She was our million dollar baby," Mary Jane said.
A memorial service is planned for 2 p.m. today at Tom M. Wages Snellville Chapel. Donations in Valerie's honor can be made to the Ronald McDonald House, 5420 Peachtree-Dunwoody Road, Atlanta, Ga. 30342.