Raise funds for The Childhood Tumour Trust

For those of you who don’t know our story…

Our wonderful 10 year old son has Neurofibromatosis type 1. This is an incurable disease. Amongst other symptoms, nf1 causes the growth of tumours on nerves anywhere in the body. Oliver has an inoperable tumour from his knee to his heel in his left leg. Unfortunately, despite it being benign, it is not ok to have. It is inoperable as it has taken on the main nerve in his leg and removing it would paralyse his leg. It has crushed his fibula, causing a break that cannot be fixed due to the position of the tumour. He also has fluid in his bone marrow making his bones more likely to break. His tumour has also stunted the growth of his left leg, making it shorter and weaker than the right one. Oliver’s ankle grew into the wrong position when his fibula broke and he is likely to have his second operation to try and correct that in the next few months. What the future holds for Oliver’s leg is really an unknown. We are lucky that, unlike a lot of children with this condition, Oliver has not developed a tumour behind his eyes (this normally happens by the age of 8) and so he will not lose his sight. We are unlucky that this is such a rare condition and despite being symptomatic, he did not get his diagnosis until he was 8. Had he been diagnosed at a younger age when his tumour was smaller, it could have been removed, saving the bone and long term, saving his leg.

So, the point of this…

This May we are going to do 5k every day! For obvious reasons, Oliver can’t do this so Jason and I will do it on his behalf. We will run, we will walk and we promise not to include driving!!!

We are doing this to raise money for The Childhood Tumour Trust who provided much needed support and fun for us as a family since Oliver’s diagnosis.

Thank you in advance for your contribution to this cause that means so much to us.

More information about Childhood Tumour Trust: We support children and young people with Neurofibromatosis Type 1; we offer youth camps for those aged 12-17, many of these children have never met anyone with the condition and are very isolated, camps allow them to be themselves - and feel just like everyone else. We offer online support for those affected by NF1, encourage get togethers by way of online children's parties and family days out, and give money to much needed research as well as campaigning for better care and diagnosis in the NHS.