Alma has received her death notice. Parents Juan and Maria Macall describe their daughter as lively and happy. Apart from not being able to walk, she is in many ways like any other two-year-old. On April 30, Alma was diagnosed with the hereditary neurological metabolic disease MLD, metachromatic leukodystrophy. The disease is rare and causes the sufferer to lose the ability to move. So far, only one child has undergone the treatment in Sweden – and without it, Alma’s life expectancy is five years. But last week came the nightmare news. The treatment council for MLD has decided that Alma will not be allowed to undergo the treatment, citing that she is already showing symptoms. – They say they don’t want to prolong her suffering, says Juan Macall. “Not naive” But he doesn’t buy the explanation and believes that the advice was not based on Alma’s individual case. – Here we have a child who is two years old and has his whole life ahead of him. They don’t have research on her two gene variants and it is not known whether medicine could help. The drug that the parents want Alma to start on is called Libmeldy and costs SEK 30 million. And that’s where Juan thinks the shoe pinches. – For now, we still have our two-year-old, but we don’t know how much longer. That’s why we’re a little stressed about her needing to get the treatment as soon as possible, he says and continues: – We’re not naive, we understand that there’s a certain risk that it won’t work, but there’s also a chance of her surviving the disease. Applying for a visa to China The fight for Alma to undergo the treatment continues. Juan and Maria are currently applying for a visa to China, hoping that she can be treated there instead. – We must turn over all stones. This must not happen. Regardless of how much it costs, all children should be given a chance at life – no matter how big that chance is. Then the money shouldn’t matter, says Juan Macall. Ricard Nergårdh, chief physician and chairman of the treatment council for MLD, does not want to comment on Alma’s specific case, but says there are clear guidelines for who has the right to undergo the treatment. – It is very clear in the indication which patients can benefit from Libmeldy. All patients who meet the approved indication have the opportunity to be treated with Libmeldy, he tells Expressen.
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