Finally, Magnus and Ingrid was going to get answer why Emil, their even year old son, was showing strange symptoms. They walked into the meeting at Uppsala Akademiska hospital with a mix of anxiety and hope.
It was a Tuesday, August 26, 2014. The day Emil got his death sentence.
The doctor told them that Emil had something called X-ALD, a genetic disorder that in its most severe form only affects boys, slowly killing them. If the disease is discovered in time it can be stopped, but it was too late for Emil.
In Sweden all newborn babies are screened for 25 different, rare and curable diseases. Emil’s family knows that it is too late for their son, but do not want the same fate affect other boys. Five years ago the National Board of Health and Welfare initiated a process to include X-ALD into the baby-screening. That process is now concluded and the final recommendation is a no. Magnus and Ingrid has read the motivation behind the negative outcome. They do not agree with the reasoning and are upset.
”In a way, this means that Emil’s life is not worth anything. They will send more families into this disaster.”