Although the Milroys learned the disease could shorten their daughter's life, they are not giving up easily. They hope Haylee will have a successful bone marrow transplant and a long life. Even so, she will have to be checked regularly for signs of cancer.
Haylee had been through bone marrow tests and a series of blood tests for lupus, Lyme disease and spinal meningitis, but there was no diagnosis until she was sent to specialists in Cincinnati.
Candice was concerned about the abnormal blood because her father died of leukemia when he was 34.
"We went to Cincinnati in November and saw 15 specialists in three days," said Candice.
Haylee will return to Cincinnati in May to be checked by more than a dozen specialists and have a third bone marrow test. She is put asleep for the test that is done in her hip.
The Milroy couple learned early on that Franconi anemia is a recessive disorder. If both parents carry a defect (mutation) in the same Fanconi anemia gene, each of their children has a 25 percent chance of inheriting the defective gene from both parents.
As soon as Candice learned about the problem, she headed for the Internet to learn more. She learned the symptoms are birth defects, small frame, kidney problems, skin discoloration, small head and eyes.
"I've read, read and read about the disease," Candice said. "The Internet says most people don't live to adulthood. A book says it's deadly."
Though it is considered a blood disease, it can affect all systems of the body. Many patients can develop acute myelogenous leukemia at an early age or they can have head and neck, gynecological, and/or gastrointestinal problems.
The Milroys decided against having more children after learning about Haylee's problem.
Bruises easily, and immune system is low
Haylee hasn't had to have any blood or platelet transfusions yet, but she bruises easily and her immune system is low, her mother said. She is kept away from other children who may be sick because her body is not able to fight common diseases, Candice said.
They had to stop going to day care, where Candice worked and Haylee spent time with the other kids.
Haylee also is watched closely for internal bleeding because she is a free-bleeder.
"She used to help her daddy at the garage, but she can't be around any chemicals, cleaners, gasoline or paint," Candice said.
"On most days, she's a typical 3-year-old, but you can tell when she's not feeling well. She lies around and wants to be carried," Candice said. Haylee also has a poor appetite.
"She's spoiled, too. She was the first grandchild, niece, and great-grandchild in the family," her mother said. "When she's sick, she is worse."
