Tell us about yourself and the patient in your life:
My name is Sandra and I’m the mother of Alma, a 6 year old girl with a smc1a mutation. Alma had her first seizure at 2 months of age. She is a very happy girl, she loves to play with books and toys but what she likes the most is to be given loud kisses. Alma cannot talk or walk but the hardest for her and our family is seeing her suffer from epilepsy. Alma has an older sister who adores her, her called Telma.
What is your hope for the future for your loved one:
My biggest wish is that Alma don’t have more seizures.