Muk (2.5) has childhood dementia: 'It is unbearable that she would no longer recognize us'

Muk is only 2.5 years old and laughs, plays, and sings. Yet her parents, Nadine and Rik, already know she will decline and probably won't live past 12. They are now raising awareness about childhood dementia.

According to Nadine and Rik, Muk is a cheerful and imaginative girl. Their world collapsed earlier this year when their daughter received the devastating diagnosis of Sanfilippo, a form of childhood dementia. This disease affects approximately one in every 50,000 to 60,000 children.

Dementia seems inextricably linked to old age , but that's a persistent myth. While it most often manifests later in life, this isn't always the case .

Sanfilippo is a rare and fatal metabolic disorder. It causes children to rapidly lose their skills and memories. Gradually, everything disappears: speaking, walking, and playing.

"Muk's prognosis is dire," says Nadine Walter, Muk's mother. "The life expectancy of children with this disease is between 12 and 15 years. If she lives that long, it means she'll be in a wheelchair towards the end of her life and will be able to do little to nothing just before she dies. She won't be able to eat on her own, she won't be able to talk, she won't be able to walk, and worst of all, she won't even recognize us. That idea is unbearable for us."

Nadine and Rik have established the Muk Foundation against Childhood Dementia. They hope to raise €1 million in a short time for a treatment that could potentially save Muk's life, or at least improve its quality. More than €25,000 has already been raised.

In the United States, a groundbreaking gene therapy is about to be approved by the FDA. This treatment could slow the progression of the disease and give Muk the chance to remain himself and perhaps even grow old. According to Nadine and Rik, waiting until the therapy is available in the Netherlands isn't an option. By then, Muk will be too old, and the damage may already be irreversible.

The foundation ultimately aims to facilitate more research into childhood dementia. They also want to focus on fundraising for others and raising awareness.