Toddler Jayme died of rare muscle disease SMA

Jayme van Pelt, the toddler who received a very expensive medicine in 2020 thanks to donations against the rare muscle disease SMA, has died. That’s his mother announced† She writes on Instagram that she let Jayme “go full of love”.

The 3-year-old Jayme suffered from the rare deadly muscle disease Spinal Muscular Atrophy (SMA). A single injection of the drug Zolgensma could help him. This was not possible in the Netherlands because doctors from the Dutch SMA expertise center in Utrecht did not support the treatment, explains Omroep West.

In order to get the drug for Jayme, money was raised for treatment abroad. The then 1-year-old Jayme went to Budapest for three months where he received the medicine.

Since November 1, 2021, Zolgensma, which is known as the most expensive drug in the world, is reimbursed from the basic package.

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