Charlotte’s Story


My Princess is called Charlotte. She is 10 and was diagnosed with KCNQ2 in 2018 after 9 years of horrific seizures since day 3 of life and in utero. I was told when Charlotte was 12 weeks old if they could not stop her seizures she would pass before the age of 6 months. The neurologist then said “if she does survive past this age it is very unlikely she will develop past that of a 6-month-old….. the latter was true. Charlotte is unable to walk, weight bare, talk or attend to any of her own needs. However, she is beautiful and funny and smiles with her entire heart. I am blessed to have her. I am a very strong advocate for Charlotte and believe she should enjoy life to the fullest. I believe thinking outside the box gives Charlotte opportunities others would not think of. In the pictures attached Charlotte is having the time of her life in Disneyland. There are a million things neither of us can do due to Charlotte’s condition but that won’t stop us!