Magnus with SMA Type 1 is 18 years old and lives permanently on respirator. This was one reason why the Medcinrådet did not give him access to Sprinraza. Magnus» parents were able to enroll at the last minute in the EAP program in Belgium.
Since those days, travel Magnus with his parents every quarter of a year at their own expense to Belgium to get Spinraza. He pay the cost of the trip and the hospital stay yourself.
The drug has achieved a good result in adults.
Magnus has regained more quality of life. Meanwhile, he sits back his powerwheelchair and can these steer.
Let’s hope that Medicinrådet finally provides the life-saving therapy to all of its patients. The end of the month is the third attempt.