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2 years old
Friesland, The Netherlands

Meet our little warrior Sverre! Sverre was diagnosed with SYNGAP1 in May 2022 when he was almost 2 years old. Sverre seemed like a normal baby, but when he was around 6 months old, he was missing milestones, and he would eventually meet them much later than his peers. We had to practice all new things like rolling, sitting and crawling over and over again. And then the nights, Sverre was (and still is) a terrible sleeper!! I always thought that it was strange, and I often said, “I don’t know what it is, but Sverre is different than other babies”. When we found out that about Sverre’s Syngap1 diagnosis, our world was turned upside down. Syngap changed really everything, and still it is hard for us to accept it.

Sverre is a very happy and sweet boy. He laughs a lot and everyone who meets him, loves him. Sverre is extremely social and has a great sense of humor. It is very difficult to see Sverre struggling everyday. All of the activities his peers are participating in are much more difficult for Sverre. Alongside SYNGAP1, Sverre has a developmental delay and epilepsy. Before starting medication, he was having 120 absence seizures a day. Since starting medication, he has made major strides in his development. We are so proud of him.

Sverre will be 3 years old in June of 2023, and he has yet to say his first word. He babbles all day long so we are hopeful he will have some language someday. Sverre loves music, dancing and everything with wheels like cars, trucks etc. Most Syngapians love water; Sverre hates water. He also hates wind, so being outside is difficult some days. We don’t know what the future will bring for Sverre – will he be able to talk? Will he ever graduate? Will he ever get a job? That’s hard for us, but every day he brings a lot of joy in our lives, and I’m so proud of him! “Day by day, step by step”…. We hope there will come a cure some day that will make his life a little bit easier!