Ulises was born in April 2019. From the first day we knew that something was wrong with him. He had feeding difficulties from the start, for no apparent reason. After a couple of quiet months, we noticed that Uli did not meet the expected maturational guidelines. It took us more than two years to get the diagnosis of ATRX. Until we got it we went through a lot of uncertainty, bewilderment and many visits to the hospital.
Despite his difficulties growing up, Ulises is a cheerful and loving boy. He really enjoys strolling , playing in the water, getting on the hammock and eating pizza! He really likes to make his favorite toys sound and for him everything is better if it is accompanied by a song
Although the most widespread reaction of the doctors was to tell us that there are no clear paths to help Uli in therapeutic terms, in a few months we understood that the knowledge and tools to find solutions already exist and that with a little organization, resources and help we can push on science to focus on giving hope to all children with a rare genetic disorder and their families.