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11 years old
Medellín, Colombia

Simón lives with his sister, father, and mother. When he was 6 months old he was diagnosed with low tone and a global developmental delay. He started to walk at 2 years old and since then, he has been in Occupational, Speech, and Physical Therapy. After almost 9 years of countless exams (EEGs, genetic tests, and MRI’s) he got the Syngap1 diagnosis.

Nowadays he goes to a specialized center to get individual comprehensive therapies. Simón has made slow progress, although he has no verbal language (he only says Dad, Mom, and Tata to his sister), he understands everything and is very persuasive. He makes himself understood through signs and gestures. Simón has no diagnosis of epilepsy. However, his fine motor skills are poorly developed and he has difficulties with attention. He walks, runs, moves easily, eats and sleeps very well.

Simón is a like a box of surpirses. He is cheerful, tender, and happy, however, he has a low tolerance for frustration when he is denied access. Thus, he can be self-aggressive, hitting himself on the head and loud screaming.

He loves music, animals, horseback riding, going to the movies, parties, swimming, anything technological, and playing puppets.

Simón is our reason for being and worth fighting for. The whole family revolves around his well-being, progress, and happiness.