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November 17, 2017
Mother of Patient Runs 10K for Son, Children’s Inn at NIH

In September, Carly Israel-Agin was passing through airport security when her son’s school called. Her 8-year-old, Desi Borstein, had a rapidly increasing fever. She went straight to his school and administered a painful shot that broke the fever.

Carly Israel-Agin with her son Desi Borstein
Carly Israel-Agin with her son Desi Borstein

The next morning, Israel-Agin did something she’d never done before: she ran a 10K.

“Desi’s super brave and I figured if he could withstand the pain, so could I,” the Ohio mother of three explained. “It felt amazing to push myself and it’s because of the example I have in my little guy.”

Running that distance was important to Israel-Agin because she’s part of the Children’s Inn at NIH’s #RunINN4Kids Marine Corps race team. On Oct. 22, she ran in the MCM (Marine Corps Marathon) 10K, a 6.2-mile race that passes by some of the most recognizable landmarks in Washington, D.C., and Arlington, Va. To join the team, runners must raise at least $600 for the inn. She raised more than $7,000.

Israel-Agin joined because she and her son are one of more than 13,000 families with children participating in clinical studies at NIH who have stayed at the inn, for no charge, since 1990. She doesn’t know where her family would be if it wasn’t for NIH and the inn. So she wants to help others in her position.

Desi doesn’t have a diagnosis. He was born with a complete blockage of a vein that normally circulates blood from the brain to the heart. As he grew, new veins formed and bypassed the blockage. However, the veins prevent the bones in the back of his head from closing. He also repeatedly gets unexplained high fevers that can rise above 107 degrees if left untreated.

Desi first came to NIH when he was 3 years old at the suggestion of a local immunologist who believed NIH was his best chance, since no one could figure out what was wrong with him.

“We are so grateful when doctors are willing to admit they need help,” Israel-Agin said.

He was enrolled in a study sponsored by NHGRI’s Dr. Daniel Kastner and underwent a week of extensive testing. Since then, he’s been under the care of several specialists at NIH including NHGRI’s Dr. Amanda Obrello, nurse practitioner Patrycja Hoffmann and NIAID’s Dr. Juan Ravell.

Desi’s doctors, despite lacking a diagnosis, have found a medication that has kept him out of the hospital for the past 10 months. He’s kept busy during that time. Israel-Agin said he’s begun to write stories with his best friend from home. He and his family like to watch cartoons and Cleveland Cavaliers games, play video games, soccer and kickball, bake cookies and crack jokes.

At the inn, Desi has found a place like home. His mom said he especially enjoys checking his inn mailbox every day for a special treasure. When he’s there, he sleeps on a pillowcase that a volunteer made.

“It’s his place,” his mom said. “He also loves the air hockey table and the fact that he knows his way around.”

And what’s Desi’s favorite part about the inn? “Everything!”

In early October, Israel-Agin said one of Desi’s doctors at NIH asked him to come back.

“We no longer expect a magical solution, but I heard words I have never before heard,” she said: “‘We found someone who closely resembles your son.’”

Doctors have identified a new lead that might provide more insight into Desi’s condition. It could one day lead to a diagnosis.

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