Child influencer Jelte dies at 5 after battle with rare genetic disorder

Jelte had been living with MLD, a rare inherited disorder that progressively damages the nervous system

Dutch child influencer Jelte, who touched thousands of followers by documenting his life with a rare genetic disorder, has died at the age of five.

His mother, Sanne de Haan, announced that Jelte passed away peacefully on June 16, 2026, sharing the heartbreaking news with the family's online community. “Our sweet, brave boy has passed away peacefully,” she wrote, expressing both grief and gratitude for the time they had together. (people.com)

Jelte had been living with metachromatic leukodystrophy (MLD), a rare inherited disorder that progressively damages the nervous system and causes the loss of motor and cognitive functions. He was diagnosed at the age of two after his parents noticed developmental delays and began seeking answers.

Following the diagnosis, Sanne and her family began sharing Jelte's journey through social media and a blog, where they raised awareness about MLD and offered an honest look at life with a child facing a life-limiting illness. Over time, they built a community of more than 23,000 followers, many of whom drew inspiration from Jelte's cheerful spirit and resilience.

Despite the challenges posed by his condition, his mother frequently highlighted moments of joy and focused on giving her son the best quality of life possible. Supporters regularly followed updates on his treatment, milestones and family life, turning Jelte into a symbol of hope for many families dealing with rare diseases. 

After news of his death was shared, followers flooded social media with messages of sympathy and remembrance, praising the family's openness and thanking them for helping bring attention to metachromatic leukodystrophy.

Although his life was tragically short, Jelte's story left a lasting impact on thousands around the world. Through his family's advocacy, his legacy is expected to continue raising awareness about rare genetic disorders and supporting other families facing similar challenges.