Something quite rare and remarkable in Big Sky Country

Photo of Delilah by Linda Thompson for the Missoulian

Today is a big day in Missoula, Montana – one of the prettiest little towns in America. It’s “Delilah’s Day,” a citywide blood drive hosted by the local Red Cross office, and it’s meant to remind potential donors of all the very important people, like local beauty Delilah Leusch, who need blood donations to survive.

Big Sky -- Missoula, Montana

Delilah Leusch, the 17-month old grandniece of my good friend Lucy Leusch, was born with Diamond Blackfan Anemia, one of the rarest blood disorders in the world. The disease is characterized by the failure of bone marrow to produce red blood cells, leaving its victims severely anemic and in need of blood transfusions about every two months.

Only about 700 people in the world have Diamond Blackfan Anemia, a ribosomal protein disease that is generally diagnosed in the first year of life. It can be treated through blood transfusions and/or corticosteroid treatment –though right now, Delilah’s parents are depending solely on her bi-monthly blood transfusions.

Dana & Delilah Leusch in the hospital

“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. I don’t know where we’d be without it.”

On Monday, Delilah went in for one of her transfusions. She sat on a bed in the pediatric unit of Community Medical Center, Nurse Peg Long set her up with an IV, and she lay there for three hours while the red blood cells she desperately needed coursed into her tiny veins.

“You can really see the effect on her,” her mom said. “We call it getting the juice, because she’s just very energetic in the days after the transfusion.”

Children with Diamond Blackfan Anemia have a good prognosis for a normal long life, as long as they can get the red blood cells they need – which can only come from drug treatments or blood donations. The Red Cross blood donations collected today in Missoula won’t be used specifically for Delilah, but she is the face of the drive. Probably because she has a very, very adorable face.

“Delilah 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.”

Delilah’s disease may be rare, but like every child, she’s utterly irreplaceable. I’m giving my $100 today to the DBA foundation for research to help kids like Delilah, and giving my blood to the Red Cross as soon as I get home.