We are a normal, hard-working family, without any history of any kind of rare disease, which we have encountered in life with a great milestone …
Since they are diagnosed with our little daughter, Ivet, our life has taken a turn and we have gone from full happiness, to a very big pain. Knowing that she has the given days, knowing that she will not do anything that we do, (neither the simplest thing of all, nor drink water if she is not shaking), neither understand things, nor express themselves, nor walk, nor run, nor climb mountains … what more immense limitation She is totally dependent on someone who cares for her, who helps her in everything, despite everything. But within its limitations, and within its world, we think that she is happy.
He looks at us, he feels loved, he gets very happy when he arrives at Cucut d’Ullastrell, the kindergarten who cares for her and loves her, not just educators who are wonderful, but also children. They play a very important role in their lives, they have an instinct that we do not have adults, they know perfectly well that she is different and they take care of it, they protect her, and most important of all is that they are taken into account for everything.
Our goal is undoubtedly that she does not suffer, to smile and to be happy as long as she is with us and for this reason we have no other way than the research. To improve the lives of children who suffer from MSD not only with the esteem and constant attentions that we give to everyone who surrounds them, but also with research, with advances and with full hope in a better future for her and for all the children who suffer MSD. The best part is that science already knows how to “cure” this disease, but that due to lack of resources, projects like the one that we want to promote are not going ahead.
Gene Therapy is a technique that locates the defective gene and replaces it with the correct gene to cure genetic diseases such as MSD. We want to get resources to investigate, to advance and because in the future these rare diseases of our society appear, either with prevention, or with the care, specifically the one that we find at home, which is the MSD – Multiple Deficits of Sulfactase.
A CURE IS POSSIBLE, TOGETHER WE CAN GET IT !!