In the Loop

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Sep 30, 2014 · Leave a Reply

Ready for His Close-Up

By In the Loop @intheloop

SmithSamJude760Sam and Sky Smith never wanted their three-year-old son, Jude, to be a star. Not like this, anyway. But young Jude has taken to the small screen and become something of a poster child for ITP awareness, sharing his story with the Mayo Clinic News Network.

Jude's medical journey began a little more than a year ago, when Sam and Sky began noticing unexplained bruises on their young son's body. "They were in strange places, like on his stomach, all over his face," Sky says. Then came uncontrollable nosebleeds and "rash-like outbreaks" on his skin, which doctors called petechiae. Initially, medical tests were unable to tell the Smiths what was wrong. "It was terrifying," Sam says. "It was very upsetting. It could be anything from leukemia to lymphoma to, we don't know what else."

After tests ruled out certain cancers, Mayo Clinic pediatric hematologist Behzad Bidadi, M.D., began taking a closer look at Jude's blood. He noted that Jude's platelets were extremely low, which helped him pinpoint what he, and Jude, were up against: a rare autoimmune disorder called idiopathic thrombocytopenic purpura, or ITP. "The detective work has been incredible," says Sky. Now, once a week, Jude gets an injection of romiplostim, which stimulates the bone marrow to produce more platelets. The approach has been tested in adults but is experimental in children. So far, it's working very well for Jude, and his platelets counts are nearly normal.

The Smiths decided to share Jude's story to shine a brighter light on this rare disease that affects one out of every 30,000 people but "is not a well-known or particularly well understood disease," Sam tells us. "We were happy to have the opportunity to spread some awareness about our son's disorder, especially because September is ITP awareness month." Sam admits watching "18 months of worry" be condensed down to just a few minutes hasn't been easy. "It's hard to appreciate just how much Jude has been through, and it can be very overwhelming to watch 18 months of day-to-day worries play out in 3 to 4 minutes," he says.

As for Jude, Sam tells us he was shy at first, but it didn't take long for his young son to make the most of his small screen debut. "He was a real ham on camera," Sam says. "I think he liked being the center of attention." Turns out, he also likes the finished product. "Jude loves it," Sam says. "For several days, he kept asking, 'Daddy, wanna watch the video?'"

You can see Jude's story yourself in the video below. Then, be sure to share your comments and share this story with others.

 

Tags: Dr. Behzad Bidadi, Idiopathic thrombocytopenic purpura, Patient Stories, petechiae

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