childhood epilepsy

‘He’ll have severe disabilities.’ Each smile is priceless. We have an even greater appreciation for the ‘little things.’: Mom advocates for son with undiagnosed condition, ‘He’s one of a kind’

“Our 6-week-old son lay in a hospital bed next to us, all hooked up. The prognosis was grim. Watching your child have seizure after seizure, knowing there’s nothing you can do, is gut-wrenching. He might not understand what’s happening, but he’s so strong.”

‘My best friend said, ‘You’re too depressing to be around. All you talk about is your pain and sickness. You need to hold it all in, or I won’t be your friend anymore.’: Woman written off by society finds ‘unconditional love’ in chronic illness community 

“For 8 years, I couldn’t get the medicine I needed because doctors suggested I was complaining about nothing. They dismissed me with, ‘It’s all in your head.’ I became an expert at denying my own pain. I resigned from my job. Being sick was not something people wanted to hear about.”

‘Call 911!’ My baby was twitching. I held his limp body. I heard sirens. They were coming for MY child.’: Boy suffering from Childhood Epilepsy undergoes brain surgery, ‘he is now happy and living with half a brain’

“We were getting ready for a nice picnic at the park. Suddenly, the right side of his body went stiff. His oxygen dropped. First firefighters, then paramedics. Our house was full of first responders. ‘Why is nothing working?!’ I wanted to wake up from this nightmare. I wanted him to live. I held my breath.”

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