Danish boy cannot get important treatment because of Trump

Seven -year -old August and his family finally stood with a solution in hand. After years of uncertainty, they had found a treatment in the United States for the boy suffering from a rare gene defect.

But just as hope was turned on, it was torn away again.

The parents had been awarded that an NGO would cover the treatment, but after cuts in the US health system, the funds were cut away.

Now the family is left with a bill of up to DKK 6.7 million – money they are desperately trying to raise before the medicine expires.

It writes TV 2.

The treatment was in place – until it was not

August suffers from the gene defect SPG50, a disease that slowly breaks down the nervous system. According to a chief physician in brain and nervous diseases at Rigshospitalet, the diagnosis means that most patients do not live by their early 20s.

The family had finally found a hospital in the United States that could offer the treatment and the medicine was already produced. A NGO had also made the funds available for August to receive the treatment through a study at Rigshospitalet in October.

But then the cuts hit. The latest adjustments in the US health system and the reduction of funds to the National Institutes of Health meant that the NGO withdrew its support.