aHUS REAL STORIES

Meet Justice

Diagnosed with aHUS at 9 months old

Danielle first noticed something was wrong with her son, Justice, one morning when he was 9 months old. His face seemed a little swollen, which she attributed to allergies from trying a new food, until the next day when he woke up crying with even more facial swelling.

Justice, diagnosed with aHUS at 9 months old, reading a book with his parents

She and Justice’s father, Greg, brought their son to Urgent Care where he was treated for pink eye and sent home. Later that day, Danielle noticed that Justice’s body was very limp and his eyes didn’t seem to be focusing on anything. They rushed him to the local hospital, by which point Justice had begun to have a seizure.

Doctors at the hospital were unable to stop Justice’s seizure and advised that he be transferred by helicopter to St. Louis Children’s Hospital. Once there, the medical team told Danielle and Greg that Justice was experiencing kidney failure, which was causing him to bloat. He was intubated and started on dialysis for a couple of days, followed by plasmapheresis for another couple of days. “Justice had entire teams of doctors initially,” recalls Greg. “It was heart-wrenching to see all these medical experts coming in, giving their thoughts, checking him and all of his symptoms, and trying to figure out what it was.”

Justice, diagnosed with aHUS at 9 months old Justice, diagnosed with aHUS at 9 months old, with his parents

Several days later, Justice was diagnosed with atypical hemolytic uremic syndrome (aHUS), a rare, genetic, chronic, and life-threatening disease that can either be caused by genetics or a trigger that can progressively damage vital organs that can lead to stroke, heart attack, kidney failure, and death.1,2 Danielle and Greg were devastated at first, but Justice’s doctor explained that his aHUS could be managed.

His parents describe the joy of watching their son be a playful child enjoying many firsts like eating ice cream or going down a slide. Danielle says, “I appreciate all of the little things like taking Justice to the store, or taking him to the park, or going to parades. Every day is a very big blessing for us.”

References:

  1. Benz K, Amann K. Thrombotic microangiopathy: new insights. Curr Opin Nephrol Hypertens. 2010;19(3):242-247.
  2. Tsai HM. The molecular biology of thrombotic microangiopathy. Kidney Int. 2006;70(1):16-23.