Amy is a 15 year old teenager who is a major One Direction fan. She also happens to have hydrocephalus. She has bravely undergone over 20 major surgeries since she was a baby.
Amy has grown up becoming an expert in the management of her hydrocephalus. But she understandably dreads the possibility of more surgery in future. This means Amy can be reluctant to tell her parents when she experiences headaches. Her mum and dad then worry that she does not yet understand how serious the risks are.
Amy is always the first to help someone if they are in trouble, and would like to work with children. She loves her weekly St Johns Ambulance club where she goes to learn first aid and other practical skills.
Amy has tried to raise awareness at her school about hydrocephalus, but says her teachers don’t always understand or know that she might need extra time or help. Like a lot of young people with hydrocephalus, Amy is the only person at her school with the condition. Some of her classmates have been extremely unkind and bullied Amy in the past, so she has felt extremely lonely.
Thanks to support from Roald Dahl's Marvellous Children's Charity, Amy has been helped by a charity called Shine. Shine helps individuals and families afffected by hydrocephalus and spina bifida.
This support means that Amy is now in contact with a specialist Education Adviser who gives her helpful tips. The Education Advisor also works with her school to make sure they understand and meet Amy's needs. Amy has also become involved with a new club run by Shine called This is Me. This is a closed online forum for young people like Amy to connect together.
Amy says she was not expecting the This is Me club and it came out of the blue. Amy's dad said it came at "just the right time" for her and has been a "massive help."
Amy now has lots of new friends, many who have hydrocephalus too. She can trust and interact with them without fear. Amy had previously not known anyone at all with hydrocephalus. Although many of Amy's new friends live far away, using social media is the next best thing to help her feel less isolated.
Amy will be attending an outward bound event which Shine will running with the help of other funding. Hopefully here she will meet up with some other club members.This is the first event of its kind that Amy has wanted to attend, and her confidence is growing every day.