He suffers from a rare disease: Matteo (3) is terminally ill, but the health insurance does not cover the medicines

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Jasmin Wilker (41) is desperate. Her son Matteo (3) from the Lower Saxony municipality of Bohmte (D) suffers from the fatal Tay-Sachs disease.

But thanks to a medicine there is hope for the little one. “We try to look ahead, even though we sometimes feel powerless,” Matteo’s mother told ‘Bild’. But now the next shock: the health insurer does not want to pay for the therapy.

Tay-Sachs is a serious nerve disease that is fatal in many cases. The chance of you getting it is 1 in 250,000. They lose all the skills those affected have learned. This means that at the age of three, Matteo cannot walk, cannot talk and also has very poor eyesight. But he can express his feelings.

Since Matteo started taking a medicine with the active ingredient miglustat at the beginning of this year, he has been feeling better. “Matteo can look at us again, is more awake and responds better to his environment. “He can even laugh and cry again, which is rare for children in advanced stages of the disease,” says the mother of two.

And: “His head position has also improved, making it easier for him to eat.” His doctor confirms that Matteo is doing better. Given his diagnosis, it is not self-evident that he can eat and drink himself. The goal is not healing, but rather saving time.

Family cannot afford medicines – health insurer refuses

For the family, every moment with Matteo is priceless. But there is a catch: the medicines cost 6,000 euros per month. Because it is an off-label drug that is not approved for the treatment of Tay-Sachs, the health insurer does not want to reimburse the costs.

Even though Matteo’s life could depend on it. Children who develop Tay-Sachs often die from an infection between the ages of two and four. The family has no money to pay for therapy out of pocket.

The health insurer also does not want to reimburse the monthly costs of 6,000 euros. From the Wilker family’s point of view, refusing the medication is a violation of Matteo’s fundamental rights. Matteo’s parents filed a lawsuit and took it to the Federal Constitutional Court.

But the court sees it differently and has now ruled in favor of the health insurer. The reason: the effectiveness of the drug has not been scientifically proven enough.

Giving up is not an option

A hard blow for Matteo’s family. She can no longer appeal the verdict. “I never thought it would turn out like this,” Wilker told RTL. Curious: other health insurers in Germany pay for the off-label medicine. “There are children in our self-help group who have been using the medication for years. “It shocks me that there is such unequal treatment of seriously ill children,” the mother continues desperately.

Giving up is out of the question for little Matteo’s family. “We see week after week how Matteo is improving. Stopping the medication is unthinkable. It would mean that he would die in installments,” Wilker continues. They are collecting donations for Matteo online and have already received 60,000 euros. She is extremely grateful for this and says: “You should never give up. Instead, you must remain optimistic even in difficult times – for the children.” (jwg)

Source: Blick