John's fight for school: an extraordinary way of life begins!

John's fight for school: an extraordinary way of life begins!

Stolpen, Deutschland - In Sebnitz, the family of John, a five -year -old boy who suffers from spinal muscle atrophy (SMA), is experiencing great progress. This rare genetic disease, which often leads to early death in children, presented John's parents with immense challenges. Thanks to spectacular gene therapy that cost two million euros, John was the first child in Saxony. This therapy includes replacing a defective gene and has changed John's life decisively. Although doctors initially only gave his parents a life expectancy of 18 months, John is now showing impressive progress and will even go to school in the summer of 2025, as the Saxon newspaper reports.

preparation for school

The anticipation for school starts is bitter sweet to John and his family because they have to look around for a suitable primary school. John's mother, Jana Brandt, emphasizes that they had to register the local primary school for him, even though they know that John needs more intensive support. "We would like to send John to a special school in Dresden," she says. So far it is unclear whether it can be met. The family has to overcome a lot of bureaucratic hurdles, but there is rays: John's progress is obvious. He can now communicate better and his state of health is stabilized, which also enables him to try out different teething problems instead of only being exposed to frequent colds, as she informed the Free Press.

The changes are not just a medical nature. John enjoys playing with his tablet and listening to music. "He loves technology and likes to dance to the rhythms," says Jana enthusiastically. Despite the difficulties of finding a suitable apartment for John, which meets his special needs, the family is determined to master all challenges. John is lucky that his parents are always committed to him and fought to enable him this life -saving therapy, which is now also available for other children, since Zengensma has now been recognized in Germany. Even new drugs that are less invasive offer hope for many families affected.

, while Quality of life published .