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, http://dbafoundation.org 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.” http://www.redcrossblood.org

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.

14 thoughts on “Something quite rare and remarkable in Big Sky Country

  1. Good Evening!
    I have had Diamond Blackfan Anemia my entire life, and am now 59. It’s hard as a child, but at puberty I took less steroids, and no transfusions. At 18 I began nutritional health, and body building. Steroids were no longer required. As a scrawny kid it made sense to me to lift weights. In hindsight the amino acids probably helped.
    I had a two unit transfusion once about 10 years ago.
    I’m just saying, it can get better.

  2. Hi , I am Delilah’s California grandma, Dana’s mom. Both her grandpa Steve and I are so grateful to those who have donated blood and who have supported Dana and Paul throughout this journey in getting Delilah and others like her the care she needs . It is so important to make people aware of this blood disorder and although there are so few in the world who suffer from the disease it impacts far more reaching out to family and friends. We love this child . She is very special to us. Thank you all for supporting this cause. Sincerely, Shelley Green

    • Me, too! I have been putting it off for ages, but now I’m going to pick up the phone when they call (instead of refusing to pick up) and make the commitment. And you know women give blood so much more than men — so we’ve got to step up! Have a great day!!! cheers! b

  3. Thank you so much for passing on Delilah’s story and encouraging people to give blood. Your generosity is remarkable, and so very much appreciated.

  4. Betty, thank you so much for being such an “Earth Angel” and for sharing Delilah’s story. She’s so beautiful…just like YOU!

  5. So very many thanks for this wonderful acknowledgement to both our lovely Delilah and the DBA Foundation. You have done all of her family a great service in helping us to get this information known. Your generousity is so very appreciated!

    We are all awed (that’s alliteration) with your wonderful blog and commitment to helping others.

    Again, thanks!
    Sincerely,
    Mary Ann Hogan Leusch

    • It is a total pleasure … I’m a BIG fan of the Leusch family (cause the one I know is awesome) and given the way you totally show up for each other, I’m absolutely
      positive that Delilah has angels on her side. all the best, B

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