Jelte, a five-year-old from the Netherlands, died on June 16
Credit: Liefde voor Jelte – by Sanne de Haan/Instagram
NEED TO KNOW
- Jelte, a five-year-old from the Netherlands, died on June 16 after living with a rare genetic disorder
- He was living with metachromatic leukodystrophy (MLD), a rare disorder that causes progressive loss of motor and cognitive functions
- On Instagram, Sanne shared her son’s life with over 23,000 followers, giving updates about their family life and the progression of the disorder
Jelte, a five-year-old from the Netherlands, died on June 16 after living with a rare genetic disorder.
“At 4:00 a.m. this morning, our dear Jelte passed away very peacefully in my arms✨” his mother, Sanne de Haan, wrote in the caption of a post on Instagram. “In the quiet that followed, Jelte found his final rest. It is deeply sad, yet his passing was truly beautiful. He has earned his rest and was truly ready for it. It is as it should be.”
Jelte was living with metachromatic leukodystrophy (MLD), a rare disorder that causes progressive loss of motor and cognitive functions, per Mayo Clinic.
On Instagram, Sanne shared her son's life with over 23,000 followers, giving updates about their family life and the progression of the disorder.
Credit: Liefde voor Jelte – by Sanne de Haan/Instagram
According to their family's blog, Jelte was diagnosed with MLD when he was 2 after his parents noticed developmental delays, including that he was slow to walk.
“News that hits like a bolt from the blue,” wrote the parents about the heartbreaking moment they learned of his condition. “We never saw this coming. No premonition, nothing. Shortly after this news, we picked Jelte up from daycare and, at first glance, saw a healthy child before us; nothing had changed. But in the meantime, everything had changed.”
To process the news, the family started a blog and a public social media profile to share their “fighting spirit” with the world, they wrote.
“We try to force ourselves to keep living in the NOW. To look at how things are going today. But always with an eye on Jelte's quality of life,” they continued. “We take this into account in all our choices, for now and for the future. And because there is no cure, love is our anchor. We hold on to that.”
In the comments of their Instagram post, followers shared their condolences with the family.
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Credit: Liefde voor Jelte – by Sanne de Haan/Instagram
“I wish you all immense strength, light, and love,” wrote one. “Losing your child is a punishment, but having been allowed to share life with him is the greatest gift. And I know from experience; his legacy will live on.”
“Jelte captured our hearts,” penned another. “With his mischievous face, he brought so many unforgettable, warm, and joyful moments. He gave metabolic diseases a face. We are forever grateful to him and to you for that.”
Shared a third: “What love, warmth, and dedication you gave Jelte. I wish you immense strength, love, and comfort during this difficult time. Rest in peace, dear Jelte. ✨🤍”
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