Epilepsy - @welliesandwillow

“When my daughter was born with a rare genetic condition I was obviously devastated and couldn’t stop myself from imagining our future with a profoundly disabled child. After talking to some families with the same condition and watching videos of their children walking and doing so much more than the depressing scientific papers described I began to feel more hopeful for the future. Then, a few months after she turned one, she began having seizures. She was diagnosed with epilepsy not long after that and put on a common anti-seizure medication. Her development pretty much stopped. She became much more fatigued, had far fewer ‘good days’ and my hope started to ebb away. This is what epilepsy does. It gets in the way of life; it rears its ugly head when things finally start to feel manageable. It cancels holidays; it results in prolonged hospital stays; it creates sleeplessness and anxiety, and it brings a whole other unknown to the picture. People may be surprised to hear that doctors don’t understand epilepsy, at all. They don’t know what causes it (other than a problem with the brain). They don’t know why some medications work on some people and don’t on others. They don’t know why some people grow out of epilepsy whilst others get worse. I fear this is going to be Willow’s biggest and most difficult fight. This is why I want to bring awareness to the disease that is epilepsy. By wearing my purple AWARE necklace I will hopefully create more discussion and understanding of epilepsy with friends and strangers alike becoming more aware of the emotional toil this disease takes on the whole family.” @welliesandwillow

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