Six-year-old Roran Jaskulski of New Berlin just became the face of a medical first. Children’s Wisconsin says it is the first hospital in the United States to give Avlayah, a newly FDA approved therapy engineered to reach the brain, to a child with Hunter syndrome.
Roran has the neuronopathic form of the rare disease, which can rob children of speech, mobility and other hard-won skills. Clinicians say the weekly infusion is designed to halt or even reverse that neurodegeneration. For Roran’s mother, Kylie Jaskulski, the chance to start treatment feels like “extra time” with her son.
As reported by FOX6 Milwaukee, the infusions were given at Children’s Wisconsin’s Milwaukee campus, where clinicians including Dr. Michael Finkel helped build the program after federal regulators cleared the drug. The station reports that Children’s Wisconsin currently has three patients receiving Avlayah through its new program.
FDA Approval And What Sets Avlayah Apart
The U.S. Food and Drug Administration granted accelerated approval to Avlayah (tividenofusp alfa-eknm) on March 25, 2026, for the treatment of neurologic manifestations of Hunter syndrome, according to the FDA. Regulators based that decision on large reductions in cerebrospinal fluid heparan sulfate, a surrogate biomarker that is reasonably likely to predict clinical benefit…