Victoria
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Greetings from Poland!
My daughter, Victoria, was born on 10/28/2018 as a healthy girl. There was an episode of fainting in the first month of her life. At that point, we had no diagnosis. The fainting spell happened again in the fourth month of her life.
After fainting, she started having an epilepsy attack, which is when the real nightmare began in the hospital. Victoria was epileptic (seizures every 30 minutes for 5 days, she was unconscious, needed oxygen).
When the attacks stopped and she regained consciousness, she lost all the skills she had acquired so far (she did not even recognize me, her mother). Treatment and intensive rehabilitation began. The results of the WES tests revealed a mutation in the GRIA1 gene.
Currently, Victoria rarely has seizures and if she does, they are subtle. She is on two anti-epileptic drugs. She has problems with increased muscle tension, speaks very little, is looked after by a speech therapist, has problems with taking meals because she is chokes, has a very hairy body and is petite
Despite her problems, she is a very happy and lively girl!
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