The world of Evi, 33, and David, 35, fell apart earlier this year. In December, they learned that their 7-year-old son, Milan, had Landing’s disease, a rare metabolic disease. Only one month later, it was with dismay that they discovered that their other son, Mauro, was affected by the same disease.
GM1 gangliosidosis, also known as Landing’s disease, is an inherited, rare, neurodegenerative lysosomal storage disease that has destroyed nerve cells in the brain and spinal cord. Milan and Mauro will therefore not have a long life and will have to die at a young age.
Their sister Lina, who is 5 years old, does not seem to be affected by the disease. “I try to shake myself to wake up. I hope it’s a nightmare, “says the mother to our colleagues from” Het belang van Limburg “.
No treatment at the moment
Unfortunately, this disease is extremely rare in Belgium and there is currently no treatment. It is already too late for Milan, in whom the disease is already too advanced, but Mauro still has a chance that a treatment will see the light of day. This is the reason why Evi and David want to open the floor on this subject, so that things evolve. “If it’s not for our children, it will be for those who will suffer from it in the future,” they continue.
From now on, the little family wants to make the dreams of the two little boys come true, such as going to Disneyland or meeting K3. The parents have also arranged their house so that the children can stay there, without having to live in the hospital. “It’s comforting to know that they will continue to feel our hugs and hear the stories we read to them,” the mom discovered.