5. Mai um 18.00 in der Sendung RONDO in der Rubrik FOKUS Rondo Fokus | suedostschweiz.ch Julia macht es uns leicht mit der Medienarbeit. Sie mag Trampolin springen mit der Moderatorin, Kameras testen und Stativen hinterherjagen! Dankbar um ihr fröhliches Gemüt und ihre spontane, offene Art. Dies hilft uns sehr für das Sanfilippo-Syndrom zu sensibilisieren und möglichst schnell eine Heilung...
We need your help
Julia is seven years old and affected by a rare, neurodegenerative disease – the Sanfilippo syndrome. There is no healing for this disease. Within a short time, everything that Julia has learned in the first years of her life will be taken away. We promised Julia to fight for her so that this terrible disease can be stopped. We need your help. Researchers around the world are looking for a cure. All our hope lies in them and in you.
Julia was born on March 9, 2014. Chubby and alert, she looked us in the eyes with confidence.
You want to help? Thank you!
Tell others about Julia, carry our voice and her story and thus of all children with Sanfilippo syndrome out into the world. Tell about Hope for Julia, about our goals and hopes.