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FDLTCC to host bone marrow drive

The Johnson family includes Cloquet native Jessica and Kyle, twins, Everly and Coven, and Henley, who was diagnosed with a rare congenital disorder. A bone marrow donation helped save her life. Photo courtesy Prairie Wind Photography

In 2017, Cloquet native Jessica Homan Johnson's daughter Henley was diagnosed with Shwachman-Diamond syndrome (SDS) — a rare congenital disorder characterized by pancreatic insufficiency, bone marrow dysfunction, skeletal abnormalities and short stature. A bone marrow donor was needed to help save Henley's life.

Johnson said the donor, who lives internationally, was found through the International Bone Marrow Registry. Henley will undergo the transplant in May.

More than 3,600 people have joined the registry list in Henley's honor, she said.

"I think it's really the easiest way to save a life and make a huge difference in somebody's life," said Johnson, a former Fargo, North Dakota, police officer who lives with Henley, her twin daughters and her husband in New England, North Dakota.

Thousands of patients with blood cancers and other diseases need a bone marrow transplant to survive. However, most patients don't have a fully matched donor in their family. That's when they turn to "Be The Match," the largest registry in the world.

Although some people may be hesitant to potentially have surgery to donate marrow, Johnson said it pales in comparison to what a child fighting cancer experiences.

"You going through surgery is such a minor sacrifice to save somebody's life," she said.

Fond du Lac Tribal and Community College in Cloquet will host a donor registry drive Wednesday, March 28, from 11 a.m. to 1 p.m. The drive seeks people ages 18 to 44 who would be willing to donate to anyone need and who are prepared to follow through if they are called upon.

Johnson, who studied law enforcement at FDLTCC, said it is important that those who are mixed race also get on the registry, especially those of Native American decent. She knows of three patients who do not have matches on the registry, including two with Native American heritage.

Learn more at Join.BeTheMatch.org/FDLTCC. To follow Henley's story, go to facebook.com/healinghenley.

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