Mateusz

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16 years old
Tarnow, Poland

Mateusz is 16 years old, and he is the oldest known Syngapian in Poland.  He is interested in music, especially the 80’s and 90’s. He also likes fast driving, activity in the water, and is not afraid of new challenges. Mateusz is supported by loving parents Anna and Wojciech, and grandparents Barbara and Janusz.

Mateusz was correctly diagnosed with SYNGAP1 in 2020 when he was 13yo. via WES – Whole Exome Sequencing – at the Medical University of Warsaw. Mateusz’s story is very long and winding. It began when he was 3 years old. His first diagnosis was atypical autism. At the age of 5, he gained another diagnosis – drug-resistant epilepsy and after subsequent stays in hospitals, there were other symptoms: strabismus of both eyes, malformation of cerebral blood vessels, hemangioma in the brain, food intolerance, contractures in the legs.

Mateusz underwent many conventional and unconventional therapies like body cleansing, 2 cycles of stem cell therapy, chelation (toxic metals removal), supplementation. Mateusz is currently on a gluten-free, dairy-free, sugar-free diet, and his treatment of a few second epileptic shutdowns of consciousness consists of pharmacological approach and CBD oil. He also went thru after two leg surgeries, Achilles tendon and contracture in the feet. Mati attends school and after school therapies: cranio-sacral therapy, physical rehabilitation, hydrotherapy and equine. He communicates with gestures, voice intonation, can say a few words (the most awaited MAMA, DAD, ANIA, ME).

Due to the fact that Mati is a teenager, we are struggling with adolescence. The biggest problem is with behavior (but it is not constant). Despite so many burdens that SYNGAP1 carries, our Mateuszek is a cheerful, happy and friendly boy, likes company, fun, dancing, and when mom sings, invented songs in his ear. He loves traveling and visiting new places. We are striving to provide Mateusz with all the experiences of childhood that typically developing child would have.

We are very happy that after so many years we were able to find SYNGAP1 community and we can draw even greater strength and determination in the pursuit of healing of our wonderful and special son Mateusz.