When your child is diagnosed with an incurable medical condition; your entire world is turned upside down! As a parent/carer you leave the hospital/doctors with your head in a whirl.
Having a child who is diagnosed with any medical condition is hard to understand and deal with, but when your child has a diagnosis that very few people have heard of (including a lot of medical professionals) or can even pronounce seems to make it harder to take in and try to begin to understand.
Those who are diagnosed with Neurofibromatosis (NF1) and their families are left googling what it means, there are few support groups and little support outside the specialists who know what NF is.
Childhood Tumour Trust are not here to give you medical advice, but to let you know you're not alone. We encourage families to meet and just talk about everything you need to talk about, with people who understand and can relate to the endless appointments, treatments and how you feel. We aim to link people together not just in the UK but all over the world.
We want to organise special days out by providing tickets to various attractions around the country so families can spend a day together away from hospital appointments and day to day living with the condition.