Tell us about yourself and the patient in your life:
Mariia. Was born in August 2014. Severe epilepsy began at the age of 5 months. She stopped developing. For several years they could not make a diagnosis. And only at the age of 4 we found out that it was Cornelia. SMC1A. We cannot stop epilepsy. She cannot walk, does not speak, does not understand speech, does not eat on his own, does not chew. We live in Russia, the city of Chelyabinsk
Instagram account @cornelia_de_mariia
What is your hope for the future for your loved one:
I understand that nothing can be fixed or restored. We just live and enjoy every day.