A Message from a Mom
Thank you for taking the time to understand what Lennox Gastaut Syndrome is and what it can mean to a family.
Daniel has intractable epilepsy and has failed 10 anti-epileptic medications in 3 years. He has been taking CBD oil for a year. While there has been some reduction in seizure activity, it is not consistent and this treatment is very expensive.
Later this fall (November 20th), Daniel is scheduled for a rare brain surgery called corpus callosotomy He is expected to spend a week in the ICU at Sick Kids Hospital and an additional 5 weeks recovering at Holland Bloorview Kids Rehabilitation.
I am the primary care giver for my son and was required to leave my job to care for him. I am a student at York University and will graduate in the spring of 2018. During Daniel’s recovery I will be staying/sleeping at Sick Kids Hospital and Holland Bloorview Kids Rehabilitation with him, only leaving briefly to attend classes.
The expenses associated with his treatment are very worrisome and frightening. We have recently relocated to Whitby to be closer to family. Daniel will be spending his sixth birthday and Christmas in hospital.
Thank you again for taking the time to understand our story and the story of other families living with the complexities of epilepsy.
- Ashley, Daniel’s Mom