Brothers with rare disease are ‘little superheroes’

July 13, 2016  //  FOUND IN: UMHS News,

Jenni Sachs remembers the urgent phone call from nearly three years ago.

Results from her 9-month-old son Ethan’s blood tests were back: His white blood cell count was alarmingly high and he needed to go to the emergency room right away.

One word repeatedly crossed her mind: leukemia.

But further testing ruled out cancer as the cause of the toddler’s reoccurring infections, sickness and abnormally high number of white blood cells. It took advanced testing — including complex genetic tests — at U-M’s C.S. Mott Children’s Hospital for Ethan to be diagnosed with a condition even most doctors don’t know: XMEN disease. The rare immune disorder makes it difficult to fight off any infection, including the common cold.

Ethan was only the 14th known case of XMEN disease in the world. More tests led to the diagnosis of the 15th documented case — his older brother, Lucas.

“When I tell people my sons have XMEN disease, they think of the [comic book] characters. I always say, ‘Yes, Ethan and Lucas are my little superheroes,’” Jenni says.

Click here to read the boys’ full story.

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