Eight cases in the world
The diagnosis fell barely two days ago. A brutal announcement for Christine, the mother of Nino, who had started to worry last spring. “”On May 9, I noticed that he had trouble holding his right head. He struggled to turn around or go on all fours“, She recalls. The doctors then suspect a spastic diplegia, a form of partial paralysis. Some progress appears, but very quickly, the state of Nino deteriorates. From fever, an unusual stiffness, the impossibility of sitting it … A pediatrician is sounding the alarm. After a series of tests, the verdict falls: the identified disease currently affects eight children. The world.
The shock is immense for this family of three children. Ultimately, Nino risks from quadriplegia. His life expectancy could be reduced, an unbearable thought for his loved ones. Faced with the unknown and the scarcity of the case, his parents refuse to give up.
A page on Facebook
They decided to share their history on social networks through a page entitled “Hope for Nino – the fight of a little warrior”. Their objective: alerting, federating, and above all find specialists around the world-neuropediatricians, radiologists, vascular doctors, geneticists, researchers or parents faced with similar cases-to understand, move forward, and perhaps pave the way for treatment.
A call for solidarity which, they hope, will allow Nino and other children to fight the impossible.
To find out more or provide them with your help: go to the Facebook page Hope for Nino – the fight of a little warrior.
