Suzanne, Hamid, & Yasmin
My youngest daughter, Yasmin age 4, was diagnosed in February 2018 with Focal Epilepsy. Unfortunately the 2 anti epileptic medicines (Oxicarbazapene and Keppra) have not worked and Yasmin is currently having seizures every night and has been for the past 6 months. She has them upon waking in the night and waking in the morning ranging from any time between 12 midnight and 7am. Yasmin is due to start school in September and each morning, as a result of the seizures, she is very tired and unable to wake on time, this will inevitably impact her school day. It is also extremely difficult for me as a parent to lie awake most nights anxiously awaiting the seizure so I can make sure the appropriate care is in place when this happens. I also have 2 older children and struggling with the lack of sleep and constant worry has a knock on effect on our family life.
During each seizure Yasmin becomes unconscious, her breathing pattern changes, her limbs stiffen, she foams at the mouth and grinds her teeth. Each seizure lasts for 5 minutes. To have to watch my 4 year old daughter go through this every night has been an extremely traumatic experience for the whole family.
I was so pleased to see the recent News headlines of Cannabis oil being reviewed and also licensed for special cases. Cannabis oil is undeniably effective for seizures and should be readily available to all children in the UK who haven't responded to current anti epileptic drugs. We are in desperate need of an effective medicine to control her daily seizures. Alternatively we will be forced to travel half way across the world to see Cannabis oil in a country where it is legal. No family should have to go through this when it can be legalised here for medicinal reasons.
She is currently having 25/30 seizures a month, although this is not as many as the children in the News, it is a large number of seizures for a 4 year old to be going through on a daily basis.
She is also at increased risk of SUDEP (Sudden Death in Epilepsy) due to the seizures being nocturnal and uncontrolled and the erratic breathing pattern she suffers from during each seizure. It would mean the world to us if Yasmin was able to access Cannabis oil here in the U.K.
Mum - Suzanne Kidd
Dad - Hamid Dhorat