Tell us about yourself and the patient in your life:
My beautiful Sundays seizure’s started just after her 1st birthday before this she hit all the milestones and didn’t show any signs of the SMC1A mutation.
Sunday started to have clusters of seizures every day up to 20 in 24 hours, these were very hard to control. After 3 different epileptic medications we finally managed to see a difference.
Sunday is now 3 and only had 3 siezures in the past year. She started walking a 16 months old and now try’s to run!
Sunday has made so much progress since the seizures have gone.
Sunday is still non verbal but I have every belief that she will communicate with me one day.
She is the most amazing little girl.
Sunday has now started nursery and she absolutely loves it, she recognises all the staff and loves to cuddle them all.
What is your hope for the future for your loved one:
My hope is that one day I will hear Sundays voice and be able to communicate with her.