SD launches fundraiser to save Alma

Two-year-old Alma Macall in Karlstad suffers from the rare disease MLD, metachromatic leukodystrophy, and has only a few years left to live – unless she receives treatment. Swedish healthcare, however, has denied Alma treatment, and now her last hope may be a research project in China. The Sweden Democrats’ aid organization Hepatica has launched a Christmas fundraiser to save Alma.

This summer, the family received the news that Alma has the progressive metabolic disease that affects the brain’s white matter and causes serious damage to the nervous system and gradual cognitive impairment.

Alma’s disease affects her motor skills, vision, hearing, ability to swallow, and it is uncertain whether she will live to see her sixth birthday. Previously, there were no treatment options for the disease, but since 2020, there is an EU-approved gene therapy called Libmeldy, which was used for the first time in Sweden last year.

The gene therapy, called Libmeldy, is a one-time treatment but costs 30 million SEK. Region Värmland has denied Alma treatment, stating that it is intended for children in the early stages of the disease who have shown mild symptoms or no symptoms at all.

Furthermore, Region Värmland has been tight-lipped about Alma’s case, citing confidentiality and respect for the family. Instead, since the summer, the family has been forced to turn to a research project in China where they treat MLD in children in a later stage of the disease.

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The Sweden Democrats’ aid foundation Hepatica is involved in humanitarian aid projects and has recently become aware of Alma’s situation. Hepatica’s previous fundraisers have included helping refugees in Lebanon with food packages, rebuilding a pharmacy in Syria, supporting poor pensioners and single mothers in Sweden, as well as renovating a shelter at a school in Ukraine.

Now, the party has launched a fundraiser in the hope of saving Alma. Samnytt has been in contact with Sweden Democrats’ Member of Parliament Björn Söder, who is the chairman of Hepatica, and he explains that the party holds a Christmas fundraiser every year, and it was an easy decision to direct this year’s aid to Alma.

‘After being made aware of Alma’s situation, it was an easy decision for us to contribute to giving this little girl the life-saving care she needs to survive this year’s Christmas fundraiser,’ he says.

What is your view on Alma being denied care by Region Värmland and her parents now having to pin their hopes on a research project in China for their daughter to survive?

‘For a region to deny treatment, which has been available in Sweden since 2020, shows primarily two things. Firstly, Region Värmland obviously considers the cost of 30 million SEK to save little Alma’s life to be too high, and thus they have put a price tag on what a human life in Sweden is worth,’ Söder says, continuing:

‘Secondly, this clearly demonstrates that it is time to nationalize healthcare so that people’s lives are not dependent on the economic situation of the regions. It is truly frightening that in Sweden, this little girl cannot receive the care she so desperately needs to live on and experience her sixth birthday. As the prognosis shows, she will not do this without treatment.’

Support the fundraiser

Last week, the Sweden Democrats launched a fundraiser to provide Alma Macall with the life-saving care she needs to survive.

‘Since 2020, there has been treatment available in Sweden, but unfortunately, Alma has been denied it. Her last hope now lies in a research project in China, the costs of which are estimated to be 2 million SEK. Therefore, we are starting this Christmas fundraiser – to raise money and provide Alma with the care she so desperately needs,’ Hepatica informs in its fundraiser.

Those who want to contribute to the fundraiser and save Alma can do so via either Swish: 123 276 97 01 or Bankgiro: 277 9635