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.
You can help by Crafting Purple. What ever you make, make it in purple.
Or you can make a donation by clicking here.
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