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Pune, India
3.5 years old
March 13, 2019

Vivaan

His name means full of life. If you ask any parent, they will always say that their child is the most amazing human on this planet. However, we say this with pride and conviction as we have seen Vivaan fight against any complications thrown at him.

We learned about his condition in January 2018, and what an emotional journey it has been for all of us. Vivaan had to go through a series of blood tests, EEG sessions, and also a very painful CSF test for the doctors to find out that he has SynGap1. All throughout his tests and doctors' appointments, he used to be calm, cheerful, and full of life; like his name suggests.

He struggles with his speech but with continuous speech and occupational therapies, Vivaan can say at least 25-30 words now and has also started to try saying new words (not clearly) by himself. We have noticed that with repetition in different activities, he can understand and learn a lot of things. He has excellent problem-solving skills and can communicate his likes/dislikes to us with actions and signs.

Our biggest worry is what will happen to him when we're gone? Today we are here to take care of each and every little necessity of his, but we will grow old and there will come a time when we won't be there to do anything for him. Due to this concern, our goal is make Vivaan as capable as his condition can let him be and live in this world with a happy heart and smile on his face.

- Mom


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