Liz and Logan Jorgensen are high school sweethearts who dreamed of one day starting a family. In January of 2013 that dream became a reality when Eli joined their family. He appeared to be a normal, healthy baby, despite arriving four weeks early.

On Valentine’s Day, Liz noticed a small rash on Eli’s body. She didn’t think much of it, assuming it was baby acne or a reaction to the laundry detergent. A few days later the rash had spread to his entire body. They took their son to the pediatrician, who ran some tests. Hours later Eli was admitted to Primary Children’s Hospital.

Doctors determined Eli had Severe Combined Immunodeficiency or SCID - a rare genetic disorder causing a very poor immune systems. The only treatment for SCID is chemotherapy and a bone marrow transplant.

Determined to get Eli healthy, doctors worked to identify a bone marrow donor. Eli’s hospital room became a second home for the tiny family. Liz and Logan had the opportunity to reflect on their time at Primary Children’s.

Unfortunately Eli passed away on May 25th, 2013 when he was just 4 1/2 months old.

“Despite the number of challenges thrown his way,” says Liz, “Logan and I were confident he would be able to overcome them, and would one day grow up to be the healthy boy we envisioned him being. You can imagine our heartache when he left us so young, but we also found great peace knowing he was free from the struggles his little body gave him in his short life. Losing Eli is the greatest challenge we have ever had to overcome, but the blessings we have received because he was in our lives are innumerable. Logan and I anxiously await the day we will get to be with him again.”

Liz and Logan say they are grateful to have recorded their experience as part of a partnership between Primary Children’s and StoryCorps. Their story and 42 others will be archived in the Library of Congress in Washington, D.C. Some might even air on National Public Radio.

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Eli’s Story is part of an ongoing series produced by Primary Children’s. To hear other stories follow the links below.

• Ashtyn’s Story: How Faith Helped her Fight Cancer
• Hank’s Story: A New Heart for Hank
• Sadie’s Story: The Two Thing that Helped her Through a Liver Transplant

*Produced by Sandra Orton, Communications Specialist, with interviews recorded at Primary Children’s on behalf of StoryCorps, a national nonprofit whose mission is to provide Americans of all backgrounds and beliefs with the opportunity to record, share, and preserve the stories of our lives. Storycorps.org.