A four-year-old Kansas boy who suffers from a rare disease is benefiting from a newly approved treatment. The FDA recently granted accelerated approval to a new drug that treats Hunter syndrome, a condition affecting fewer than 500 people in the U.S. It’s the first approved treatment for the disease in 20 years. Atlas Neuerburg, who was diagnosed with Hunter syndrome at 18 months, has been receiving the therapy through a trial while his parents advocated for broader approval.
His parents, Jenny and Nick Neuerburg, worked with U.S. Representative Sharice Davids to push for faster action. After outreach from Davids’ office, including a letter to the FDA in March, the agency granted approval. Doctors say the treatment can’t reverse existing damage but may help prevent further symptoms and extend life if given early.
The Neuerburg family says the treatment has helped Atlas continue developing without the typical regression seen in other cases, and the approval means he’ll have continued access to care even after the trial period. The decision is also seen as an important step for other families affected by Hunter syndrome, offering new options where few previously existed.
Source: KSHB
photo: GETTY