Katie Newell lives in Braintree, United Kingdom. In Katie's words: "Being poked and proded at the age of seven wasn't fun! All I ever wanted to do is just do the stuff everyone else could do. I wouldn't say growing up wasn't enjoyable, but it was tiring, but worth it to be alive. I ended up with at least a few years break after life saving surgery in America where I went to Boston's Children's Hospital to have a rod inserted into my spine to help with the scoliosis, for both straightening and because of the tumors that had grown throughout my spine".

As Katie grew into a lady the growing of fibromas and plexiforms started all over again. She recalls being devastated. In her words, "You can only imagine what my stubborn-fifteen year old attitude saw upon everything. It was demoralizing that I couldn't tip-toe anymore and do ballet like I had previously enjoyed. I only had 30% lung function in one lung due to a tumor that compressed the other completely. I seriously felt like every road I took had a bump in it. Everything I enjoyed, just taken from me".

Each year, Katie and her mother pay tribute to Katie's Nan by doing a balloon release. There is no cemetery to go to, so they also plant flowers in their garden as a yearly memorial. Katie does miss ballet sometimes, but tends to not look at the stuff she can't do, but at the stuff she can do. After all, in Katie's words, "Life isn't about finding yourself, life is about creating yourself!"