What is Hope For Julia?
We, Ursina and Mario Rosario, are the parents of Julia (*2014) and Giada (*2017). We live in Zizers in the Canton of the Grisons.
In December 2019, the doctors informed us that Julia was affected by Sanfilippo Syndrome, a rare neurodegenerative metabolic disease whose name is almost impossible to pronounce: Mucopolysaccharidosis type III a. This terrible news has pulled the floor from under our feet.
We now had a name for all the difficulties our daughter is struggling with. We now know why she speaks less and less, why she overwhelms many situations, why she runs around aimlessly for hours, hardly knows how to deal with things and wrestles for our and others’ attention and never gets enough of them. We have begun to understand our daughter better, we can at least begin to empathize with her because we now know that her memory gradually forgets everything she has learned.
But in view of the prognosis, in view of the knowledge about the course of the disease, we have fallen into an indescribable and seemingly infinite grief. There is no cure for Sanfilippo Syndrome. Palliative care. Without treatment options, Julia has an average life expectancy of 15 years. A judgment that no parent, no person in the world should ever receive.
- we want to make the Sanfilippo Syndrome known to as many people as possible. There are so many doctors, pediatricians, teachers and therapists and specialists who have never heard of the disease and consequently do not recognize it in the children. Recognizing the disease and knowing the difficulties the affected children are struggling with is the first step in dealing with it.
- we don’t want to just give up in the face of Julia’s diagnosis and watch the illness take our daughter away from us. We promised Julia to fight for her, for Julia and for all children with Sanfilippo Syndrome, so that a cure can be found. Research has developed good approaches and is active but expensive. That is why we want to become active ourselves and collect donations and thus support research. We don’t just put up with the diagnosis and give up.
- we want to network. We would like to offer a contact point for other affected families. We want to exchange ideas and support one another. We want to fight together. Because together you are stronger than alone.
That is why we founded the HOPE FOR JULIA association.
We draw strength from being able to actively do something for our daughter.
But we cannot do this alone.
If you would like to support us, we will be infinitely grateful for it.