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Sweden
3.5 years old
June 24, 2020

Caspian

Caspian's biggest challenges started around six months of age when he could not and would not try to eat solid foods. After an exhaustive amount of doctor visits and advocating for some help, he was finally referred for multiple services. From then on Caspian had weekly visits with speech therapy and physiotherapy. And after a few months with the habilitation team Caspian was diagnosed with Autism at the age of 2. At 18 months of age Caspian started eating for the first time and by 2.5 years of age he was eating enough to stop breast feeding safely.

Sadly we had a little turn back in October 2019 when what we thought was autistic stimming behavior turned into an epilepsy diagnosis. Caspian started medication right away however, none were doing the trick. They took CT scans, spinal fluid, EEG and genetic testing. All tests came back normal, it was just the genetic. test we waited a few months for...

In May of 2020, our beautiful son received a new diagnosis of Syngap1 syndrome. Even though this was a huge surprise for us, this new diagnosis gives us answers to why Caspian has such difficult epilepsy.

Caspian is a very happy and playful little boy. He laughs a lot and loves cuddles from those who are close to him. Water has always been his favorite everything! Right now water is his relaxation when he has a lot of seizures a bath relaxes him and his seizures seem to rest for a while. He also loves the trampoline and he has just recently learnt to jump by himself with the help from his big sister, who is usually teaching him all those fun skills! And another passion of his is dancing and music! Caspian's laugh and smile can melt anyone's heart when he dances with you!

- Mom

To learn more about Caspian you can read this article by his mom or this one about his G-Tube.

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