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Our case

On April 12, 2012, we cannot forget it and it is still in our heads, our first geneticist, with a very serious tone, told us "your son presents all the symptoms of a mucopolysaccharidosis" and continued telling us everything that could happen, to then continue with "these diseases are deadly, most have no cure and their life is very short." This left us in shock and for a long time we could not react and we believed that all the information they gave us was wrong and did not correspond to our son's diagnosis. In 2016, after several years of studies, we received the diagnosis of our son Esteban, where Sanfilippo Type C was indicated.


We would like to know your story, tell us your case and your experience living with a disease like Sanfilippo or another MPS.


In May 2018, we began the search for entities and other affected families in the world who lived the same as us and could advise us. Thus, we find foundations such as Sanfilippo Barcelona, ​​Sanfilippo Portugal, Sanfilippo Brazil, Cure Sanfilippo and Stop Sanfilippo. They provided us with advice and support to assimilate the news of a slow death for our son and served as a contact platform with the Colombian families who began to be diagnosed with this terrible disease.
In July 2019 we created SanfilippoColombia on Facebook, a page that has helped us to search for more affected families in our country and where we receive messages from affected families worldwide.

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