I am mum to twins Mikey and Jasmine. Mikey was diagnosed with hemiconvulsion hemiplegia epilepsy (HHE) syndrome as a baby. When he was two, we were told he would need a hemispherectomy because no medications were working. His EEG was lit up like a Christmas tree – seizures completely dominated one side of his brain. He had a right hemispherectomy just before he turned 6, followed by a second surgery for missed connections two years later. He still has seizures, but they are mostly controlled by medication. It took us four years to make the decision due to conflicting information from medical professionals. If we had known the surgery would improve his life and calm his brain by stopping the constant seizures and removing the abnormal hemisphere, we wouldn’t have waited those four years. Hope in one hemisphere!

Kelly and her family live in Australia.