This is Sophie's Story - based on a book we made for Sophie 2 years ago when she was first diagnosed.
In mid 2009 my husband was diagnosed with Epilepsy following three life threatening Generalized seizures (formerly know as Grand Mals.) He required Intensive care treatment, tubes to breath and weeks in hospital. His drivers’ license had to be suspended and he was unable to work until his seizures were controlled. He was fortunate to be one of the 60% of people whose Epilepsy can be so well controlled by medication.
At the beginning of 2010 our middle child Sophie was also diagnosed, following a large seizure event in a swimming pool. We were confident that this was just a blip and we would give Sophie some tablets and it would all go away. This could not be further from what actually happened. Sophie’s epilepsy has proven very difficult to control with many of the medication side effects have been much worse than the actual seizures. Sophie has had numerous trips to hospital, missed terms of school and has been unable to participate in many aspects of normal life functions.
As a family living with unmanaged Epilepsy, the impact has been enormous. The unpredictability and the helplessness are very difficult. Being unable to plan ahead sometimes even a day at a time. Constantly having to be aware of your emergency plan and having to use emergency rescue medications and having a trained adult with her at all times.
We have made some progress but are still trying to find better management for Sophie and are working with Drs in Brisbane and Melbourne. Sophie has learning difficulties related to the Epilepsy and the amount of school time she has missed. Our next step is for Sophie to begin investigations for Brain surgery options.
Epilepsy affects over 50 million people worldwide, which is about 1 in 100 people. That’s more that multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined. It can affect anybody at any time of their lives our goal is to create more epilepsy awareness.
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