4 years old
August 18, 2021


Arvo was born as our second child, two years and two months after his older brother. The first developmental milestones Arvo reached "in time", but around ten months we started to notice that his motor skills weren't advancing. He also wasn't much interested in toys, which we found a bit unusual. At 2 years 3 months he started to experience noticeable seizures and was consequently diagnosed with epilepsy in January 2020. After getting the medication for epilepsy on track and having a long series of medical tests done we got the diagnosis of Syngap1 in January 2021.

Arvo loves to listen to adults reading or singing, and to look at picture books on his own too. He enjoys long showers and climbing, especially on stairs. He is also an eager walker, but due to significant difficulties in sensory processing his sense of balance is affected, which makes it hard for him to learn to walk without support. Other sensory issues include being very sensitive to sudden, loud or unfamiliar noises, having an overly sensitive sense of touch in his hands and feet, but being slightly unsensitive to pain.

Arvo is non-verbal, but understands a lot of what's being said, and is able to read situations pretty well and navigate in them accordingly. Arvo is also a very determined little boy, exploring the world as best as he is able, and communicating his feelings and needs with smiles, crying and pointing at things. He has his own sense of humor and loves to play and have a laugh, especially with his brother. With his brave spirit and ready smiles Arvo is a great favorite among his caretakers and outside the family too.

We hope that with the help of therapies and medical advances he will continue to thrive, learn new skills and be an active and happy individual throughout his life.

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