Walking 200km in March for children with epilepsy

Hi, my name is Jade and on the 13th October I gave birth to my gorgeous son, Cassius. At just 10 days old, Cassius began to suffer from infantile spasms and seizures. We very quickly learnt that he was suffering from drug resistant epilepsy. Cassius became seriously unwell from both the seizures and the drugs to try and stop his seizures, his little body just couldn’t cope. He suffered from hundreds of seizures and it was truly heartbreaking to not be able to do anything to help him. Cassius was diagnosed with Focal Cortical Dysplasia which was causing refractory epilepsy and sadly for us, after 3 weeks spent in hospital, we found out that our best option was brain surgery. The reality of living with drug resistant epilepsy was terrifying. How could he possibly have a normal life? Would he have disabilities? Could he go to school? Will he ever drive? How could I ever leave his side? A million questions went through my mind. My heart broke for him and for us. We were lucky to have the option of brain surgery, as terrifying as it was. It is our best chance at giving him a good quality of life, seizure and drug free. 

Cassius underwent brain surgery on the 28th January where he had part of his brain removed in the hope to stop his seizures/spasms. We won’t know if surgery has worked for a while but we are feeling hopeful. This part of my life has been unbelievably hard and it’s really opened my eyes to what so many children go through. I’ve learnt so much about epilepsy in such a short time and how so many children suffer. Not all children have surgery as an option and it’s something they have to live with forever. We have met some amazing people on this journey and I just want to be able to give something back. I am going to walk 200k/124miles in March which is 6.5k/4miles every day. Doing this with a 4 month old I’m sure will have its challenges, but something I am determined to do! Any donation, no matter how small, would mean the absolute world to me. Thanks for reading. X