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Estonia
5 years old
July 29, 2020

Elisabet

Elisabet was born in March, 2015 as a healthy baby. She ate, slept, and smiled a lot! Life was not perfect, it was more than that.

After about 6 months, her development slowed down in every aspect. After her 1st birthday a lot of tests were done to try and figure exactly what was the cause. None of the tests showed any cause or reason. But we already knew that time is moving more quickly than her development. We made peace with the fact that our little fairy will be different.

A few weeks before her 3rd birthday we got an answer, Syngap1. Elisabet has intellectual disorder, severe epilespy, autism, gait difficulties, and is non-verbal. The hardest thing for Elisabet is learning communication. The combination of intellectual disorder and epilepsy make for a tricky combination. Also it’s often difficult to go even for a short walk or do some outside activities because she simply likes being indoors best. Elisabet can make it pretty impossible to walk with her if she doesn’t want to walk

Despite the differences and difficulties her special needs cause, we as a family do everything for her. But we have tried to keep it balanced. Everyone in our family is important and needs to have a nice daily life and enough support and attention from both parents. Elisabet has an older brother (Oskar) and a younger sister (Marta).

We have hard days, and hard hours. We are constantly worrying about Elisabet’s epilepsy. But despite all the worry we try to have as much fun as we can.

While being a warrior this Wednesday, Elisabet and other Syngap kids/families are in war every other day of the week too. Asking for donations and sharing your most personal story is never easy, but its my duty to help my daughter and others like her as they can’t fight for themselves. I’m proud to do it and I am proud to keep Estonia on the map.

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