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Delilah Leusch has one of the rarest disorders in the world.

It's called Diamond Blackfan anemia, and it has made her beholden to those who donate blood.

"We hadn't really given that much thought to donation, but now it's one of the most important things in our lives," said Delilah's mother, Dana Green. "Anything people can do to help the Red Cross helps kids like Delilah."

On Wednesday, the Red Cross office in Missoula will host a "Delilah's Day" blood drive. Blood donated that day won't be used specifically for Delilah, but she is the face of the drive.

"She represents the people we're helping every day," said the Red Cross' Julie Brehm. "We need to collect about 700 pints a week to serve the state of Montana, and this is how we do it."

Seventeen-month-old Delilah needs a transfusion every two months to help her cope with Diamond Blackfan.

The disorder is characterized by an extremely low count of red blood cells, which carry oxygen throughout the body.

"When she was born, the doctor realized quickly that her blood was very, very thin," Green said.

Delilah, who had trouble breathing, spent two weeks in the neonatal intensive care unit at Community Medical Center, and it took about eight months to get a final diagnosis on her blood disorder.

For some children with Blackfan, red blood cell growth can be stimulated by administering a corticosteroid such as prednisone.

But other children don't respond to drugs, and must be given repeated blood transfusions.

For now, Delilah lives on a steady diet of transfusions.

"We haven't tried the drugs yet, but we will, and hopefully that will kick-start her bone marrow and she'll go into remission," Green said.

Delilah has a mild form of the disorder; some children born with Diamond Blackfan also have physical deformities such as cleft palate and heart defects.

"We're very lucky, because this is really her only issue," Green said. "She's a happy, healthy little girl who needs other people to give blood."

While Delilah's disorder is extremely rare - only 700 or so people worldwide have the condition - the need for blood is not.

"Blood has a shelf life and we are in constant need," said Brehm.

On Monday, Delilah sat on a bed in the pediatric unit of Community Medical Center. Nurse Peg Long got her set up with an IV, and eventually the blood arrived. The transfusion took about three hours.

"You can really see the effect on her," Green said. "We call it getting the juice, because she's just very energetic in the days after the transfusion."

Sometimes it's hard to see the immediate benefit of giving blood, Brehm said.

But today it's easy. Just look at Delilah.

"If we can help put a face on blood donation, we're happy to do it," Green. "I can't imagine where we'd be without it."

Reporter Michael Moore can be reached at 523-5252 or at mmoore@missoulian.com.

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