Five-year-old influencer Jelte passes away after living with rare MLD disorder
Tributes have poured in for the young influencer following his death
Jelte, a five-year-old influencer from the Netherlands who lived with a rare genetic disorder, has died after a long battle with illness.
His mother, Sanne de Haan, confirmed his passing in a heartfelt Instagram post, sharing that he died peacefully on June 16.
“At 4:00 a.m. this morning, our dear Jelte passed away very peacefully in my arms,” she wrote.
“In the quiet that followed, Jelte found his final rest. It is deeply sad, yet his passing was truly beautiful.”
Jelte had been living with metachromatic leukodystrophy (MLD), a rare and progressive genetic disorder that causes the loss of motor and cognitive functions over time, according to medical sources.
He was diagnosed at the age of two after his parents noticed early developmental delays, including difficulty walking.
The family later documented his condition publicly, sharing updates through social media and a blog that attracted thousands of followers.
In earlier posts, his parents described the shock of his diagnosis and the emotional impact it had on their lives.
“News that hits like a bolt from the blue,” they wrote at the time. “We never saw this coming. No premonition, nothing.”
Following the diagnosis, the family began sharing Jelte’s journey online, both to document his life and to raise awareness about rare metabolic diseases.
His mother’s Instagram account grew to more than 23,000 followers, where she regularly posted updates about his condition and daily life.
They also described how they tried to focus on each day as it came while prioritising his comfort and quality of life.
“There is no cure, love is our anchor,” they wrote in a previous post. “We hold on to that.”
After news of his passing, followers and supporters shared messages of condolence and remembrance, praising the family for their openness and for raising awareness of MLD.
One commenter wrote, “Losing your child is a punishment, but having been allowed to share life with him is the greatest gift.”
Another added that Jelte had “captured hearts” and helped give visibility to rare metabolic diseases.