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It's been another long, frustrating day at the emergency room for Ruby Taylor.

She goes so frequently to Children's Hospital that all the nurses and doctors seem to know her.

Ms. Taylor is the mother of one son and two adopted nieces who suffer from sickle cell anemia. In May, all three children were hospitalized at the same time.

She also has two other sons, James, 20, and Fred, 15. Fred was just diagnosed as having an irregular heart rhythm.

Ms. Taylor finally had to quit her job as a personal care aide in June. Her bosses simply couldn't tolerate her missing or leaving work
unexpectedly during the day to care for her sick children every time they had a sickle cell crisis.

Fatigue, headaches, shortness of breath are all symptoms of this inherited blood disease that attacks 150 out of 100,000 black children -- and pain, terrible bone pain that can last for several weeks and cause them to miss school.

"They talk about mind over matter -- that's a lie," said Ms. Taylor, who has sat up many nights consoling her kids. "This pain isn't like any kind of pain you and I know. But I tell them: 'You gotta be strong, baby.' "

Warm compresses and over-the-counter pain relievers are all she can use to relieve the pain. Watching her children suffer has taken its toll on her health. She has developed stomach ulcers.

A sickle cell crisis starts without warning and attacks or damages various parts of the body. It can result in seizures, stroke or unconsciousness.

For instance, one of her nieces, Naomi, 13, suffered a partial stroke in May. She must have blood transfusions every month. The other niece, Ramona, 11, and her son, Sammy, 17, have bad asthma attacks.

Ms. Taylor adopted the two girls after their mother died in New Jersey three years ago of sickle cell anemia.

Until about 30 years ago, the disease usual proved fatal in childhood. Today, improved treatments have enabled more sufferers to survive into adulthood.

"I promised my sister if anything was to ever go wrong with the kids being raised, I'd come and get them," Ms. Taylor said.

Something did go wrong. Ms. Taylor discovered Naomi and Ramona were being neglected and abused by their custodian, and she did, indeed, come get them.

The custody battle drained her emotionally and alienated her from part of her family.

Just this month, Fred has had dizzy and fainting spells. The doctors at Children's still aren't sure what's wrong, but they've determined that Fred has an irregular heart rhythm.

Because she has no car, Ms. Taylor depends on cabs or the kindness of her Grape Street neighbors to get her kids to Children's in an emergency.

Social services gives her $218 a month to live on, and she also receives $166 in food stamps. Medicaid pays for the medicine -- folic acid, inhalers, penicillin. Naomi and Sammy get Supplemental Security Income assistance, but her other children don't.

The estranged father of Ms. Taylor's sons lives here but doesn't help out in any way with the sick children, she said.

"I try to put my head up," Ms. Taylor said. "Life's rough."

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