Tell us about yourself and the patient in your life:
Vivian LeeAnn, was born in March 2015 (5 weeks early). For the first three years Vivian was happy and healthy with slight delays in speech, mobility and learning. It wasn’t until Nov 11, 2018 that our lives changed forever when Vivian had two tonic-clonic seizures. Vivian didn’t experience another seizure until March 2019 at which point she was put on medication. March 2019 to October 2019 we tried various combinations of medications and thankfully we went a year without a seizure but continued developmental delays. In October 2020 Vivian started having seizures again and seizure control has been a challenge since then. When the pandemic started we were very fortunate to receive several appointments at our local Children’s Hospital (when everyone was cancelling). In the course of 4 months, we received the SMC1A diagnosis, Autism diagnosis, Developmental Delay Diagnosis and Insomnia Diagnosis. We have tried and failed many medications in the past few years, as well as trying and failing keto. We finally found some relief with Epiliolex, her seizures have not only reduced in frequency but also in intensity. Vivian loves pretend play with her two sisters, Kinsley and Evelyn! She also enjoys playing in the pool. We love her to the moon and back, and while she may have challenges, they do not define her and she always ensures that she has a place in the room and the conversation.
What is your hope for the future for your loved one:
My biggest hope for Vivian is that she can gain more and more independence through learned tasks. I also hope that she knows how much she is loved and wanted!