Support finding cure for Syngap1 bravehearts

Elisabet was born in March, 2015. Healthy baby, eating good, sleeping good, smiling a lot.. Life was not perfect, it was more than that ❤ 

In second half of her first year her development slowed down in every aspect. After her 1st birthday a lot of tests were done. None of them showed cause or reason. But we already knew that time is moving more quickly than her development. And we made peace with the fact that our little fairy will be different.

A few weeks before her 3rd birthday we got an answer and it was syngap1. First and only syngap1 person in our homecountry Estonia. 

How syngap1 makes her different from other kids? She has:

- permanent intellectual disorder,

- severe epilepsy,

- autistic lines,

- gait difficulties

- and she is non-verbal.

Hardest part is teaching and learning communication - intellectual disorder mixed with autistic lines and severe epilepsy is quite tricky combination and makes teaching very challenging. Also its often very difficult to go even for a short walk or do some outside activities, because she simply likes being indoors more and she 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, and at the same time we have decided to keep it all in balance - everybody in our family is important and every kid has to have nice daily life and enough support and attention from parents. Elisabet has 2 years older brother Oskar and 3 years younger sister Marta. So we have a quite a nice company around every day :) And often everyday-life is higher level logistic centre supported by Elisabet´s grandparents and her individual support person, but so far seems like we have managed quite good with our little team :) We are so grateful for that. Every single day.

We have had hard days, hard hours, some crying, feeling of total unfairness,  confusion and despair, constant worrying about epilepsy. And we have had so much fun, so many happy tears, so many hugs and kisses, so many nice adventures. 

With this fundraising we are humbly asking for donations to a nonprofit organisation Bridge the Gap - SYNGAP Education and Research Foundation.  Every donated euro and dollar mean world to us, because it helps us closer to finding treatments. Science is developing so fast and Syngap1 parents must be so grateful to people leading this organisation, because thanks to them very first steps towards finding a treatment/therapies fighting against Syngap1 have already been made 🙏