Kai's Story
Kai was born 21st January 2002, we were told before his birth that he has tuberous sclerosis complex. This meant he had tumours in most of his organs, as well as autism adhd and epilepsy. Kais epilepsy was uncontrollable, he had brain surgeries and went on drug trials as well as many many drugs. Some drugs would work for a while, and we would get a Sense of relief and hope that this was the miracle to stop the seizures. Then they would come back worse than before and we would start the cycle again. Kai was a happy fun loving boy, if he wasn’t laying in your lap asking for kisses he would be dancing to music or working out how to steal food from you. He made every single day worthwhile, his smile brightened a whole room and he never ever complained or cried.
With every seizure a piece of Kai was stolen from us, he would forget the little words he knew (but never forgot how to say mum). He would sleep more, some days unable to lift his head. He would struggle to eat and sit. We were constantly hoping and waiting for the next wonder drug. When I heard about cannabis oil I was determined to get Kai onto it.
Kai ended up on life support due to a prolonged seizure and a bowel blockage, and was in intensive care for over four weeks. He pulled through like he always did and woke up smiling demanding a drink and food. When we brought Kai home his weight had plummeted and he has lost 3 stone from being on life support: my plan was to gain the 3 stone and get him onto the cannabis oil once his body had recovered. I managed to get his weight up to just over 8 stone and was excited at the thought of Kai getting onto the oil.
I put Kai to bed as normal and woke in the morning, Kai was silent. I walked into his room and found him face down in bed. Silent and still. I grabbed Kai out of bed and tried to give him cpr but it was too late. I collapsed and screamed until my lungs burnt. I wanted my broken heart to stop so I could be with him I couldn’t imagine a day without my boy in it. Kai died 20-01-2018. One day short of his 16th birthday. We later found out it was SUDEP. A silent killer. I had never heard of sudep before and once I looked into it I couldn’t believe how high risk Kai was from it.
I was told by doctors they didn’t tell me as there is nothing that could have prevented this with Kai. My world ended that day. Nothing has been the same since. But every night I look up at the sky and thank God that Kai was given to me, even for a short while. I always had a feeling that Kai wouldn’t live to see his 16th birthday. And my little Peter Pan must have known too. I am so thankful to Kai for teaching me everything that had made me who I am today. He taught me how to love, how to be patient, strong, and be his voice, he made me laugh and cry, and he taught me that you don’t need many words to show you love someone. He taught me that no matter what, keep standing, keep smiling and don’t give up. And I will do that for him. Until we are together again. Vikki Hammond
Kai's funeral, which his mother shared on social media to include those who were unable to attend in person, served as a poignant reminder of the heartbreaking impact that treatment-resistant epilepsy can have on a family. Through her courageous act, Kai's mother shed light on the devastating struggles they faced, with the aim of raising awareness and fostering understanding among others. Their story stands as a powerful testament to the urgent need for advancements in epilepsy research and treatments like medicinal cannabis. These advancements are crucial in order to alleviate the immense suffering experienced by countless families similar to theirs.
