After a two-year medical marathon with countless examinations, we received the Syngap1 diagnosis in April of 2017.
Benjamin is a very happy little boy! After learning to walk at 2 years old, nothing was safe for him. Benjamin sees no danger. He has no awareness of cars, buses, and tractors that drive through the village. In addition to the lack of risk awareness, he also has problems with perception. He feels pain much later or not at all. So it happens again and again before he reaches the power fence for the cows, and is then standing with the cows! Benjamin always needs 1:1 care, you cannot take your eyes off of him.
Animals are a big passion of his. Cows, horses, cars, and our golden retriever, Grace. The first two weeks we had Grace was very difficult. Benjamin would pull her fur constantly. Luckily now, the two are very close. Benjamin seeks her and Grace does not leave his side if he is having a meltdown.
Benjamin is very active and likes to be on the move! He likes to run around the hockey turf with his hockey stick when his siblings are training. In addition to hockey, he also loves water and swimming. He loved music, preferably very loud.
As of September, he has started a special school. Benjamin’s vocabulary is of about 10-15 words. If he learns a new word, another disappears. In addition to gestures, he communicates with the talker. Benjamin has small seizures that are invisible to the naked eye.