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Russia
4 years old
September 22, 2021

Teona

Our girl was born absolutely healthy. There were no indications that she was so seriously sick. She was able to hold her head, to roll over - all on time. When she was 5 months old we noticed that she had low muscle tone and was not trying to setup. For a year we tried to correct the situations using rehabilitations and nootropics but no luck. As time went our daughter had more motor and intellectual delays. Then she was diagnosed with epilepsy.

We got the diagnosis SYNGAP1 in August 2019 when Teona was 2 years old. The diagnosis was a big shock for our family. What scares us that there is no medicine that can help us, but we do not lose hope, we are constantly studying and trying to find the right thing for our daughter. We really hope for a miracle! We are thankful to SRF and their extensive research on a possible treatment for SynGAP1 someday.

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