On April 5, 2019, when Bjarki was 4 months old, he was taken to the children's hospital because he was unusually weak and cried so sick. When they got there, they took a big shock for Bjarki Daði's family where the doctors told them that he did not have a red reflex in his eyes and thus had little or no vision. This in itself would have been bad enough news, but they also heard an unusual sound in his heart.

Bjarki was admitted and during the next 5 days, which were the most difficult the family has experienced, he was diagnosed with a rare, incurable and serious syndrome called Sengers syndrome. It manifests itself in such a way that gradually a cloud appears on the cataracts until he sees nothing.

His heart has a thickening inside the left ventricle that will continue to thicken until it is over, but how long it will take is not known. He is on medication to slow down this thickening, but nothing more can be done.
The third symptom of this syndrome is an increase in lactic acid in the blood and it remains to be seen if and how it will affect it.

He underwent surgery on May 2 to have the cataracts removed and received special glasses so now he can see which is wonderful.

The future is completely uncertain for Bjarki Daði and his family and there are few answers related to how long the family can keep Bjarki with them. They are tackling this difficult task and doing their best to enjoy the moment.