School kids dress as superheroes to honor boy who died from rare disease

Students at 17 public schools in Wagga Wagga, Australia, swapped their uniforms for superhero costumes to honor the memory of 11-year-old Nate Lawson, who died from a rare genetic disorder. The event, Superhero Day, aimed to raise money for the pediatric ward at Wagga Base Hospital and shed light on Schimke immuno-osseous dysplasia (SIOD).

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We tried to keep his life as normal as possible. He was very much a dancer in his own time and he was very loud. He really loved his friends above everything else.

Nate Lawson battled SIOD, a condition so rare it affects as few as one in 3 million people. The disease is characterized by short stature, kidney disease, and a weakened immune system. Nate was only 99 centimeters tall and developed renal failure as the disease progressed. His mother, Kelly Lawson, described him as a vibrant child who loved his friends above all else.

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At the time, I actually didn't make the diagnosis because the X-ray changes were mild and he was still very young.

Diagnosing SIOD proved challenging for doctors. Nate experienced health issues from birth, but the rarity and poor understanding of SIOD meant it took a long time to get a diagnosis. He suffered a stroke in 2018, prompting medical staff to seek expert opinions. Dr. Andreas Zankl, a clinical geneticist, eventually diagnosed Nate with SIOD later that year. Despite frequent medical appointments and hospital stays, Nate continued his schooling.

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I re-looked at the X-ray and with the information of having a stroke, I made the diagnosis of Schimke immuno-osseous dysplasia.

There is no cure for SIOD, and treatment focuses on managing symptoms. Dr. Zankl noted that only about 100 cases have been reported globally, making extensive research difficult. The limited patient population hinders the ability to conduct proper studies, as medical understanding often relies on group data. The Superhero Day event not only honored Nate's memory but also served to raise awareness and funds for a condition that deeply affected his family and baffled medical professionals.

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Everything in medicine is variable … you need to study it on a group of patients. If you only have one or two patients to go by, then that's really hard to do. You can't actually do a proper study.