I am running the Great North run 2022 (never actually ran a half marathon before , but what's in 13 miles ?!) 

As a family we would like to raise awareness of a condition that affects 1 in 2500 people called Neurofibromatosis Type 1 (NF1). We would also like to raise money directly for the Paediatric Oncology ward at Nottingham University Hospital at Queens Medical Centre  that care for children with brain tumours.

Neurofibromatosis  affects people in different ways , in most cases  the skin is affected such marks called 'cafe au lait' spots ( these are usually flat brown spots similar to birth marks ) as well as freckling on the skin which can appear anywhere but usually under armpits and the groin.

At its most severe NF1 can cause internal tumours .Approximately 15% of children with NF1 develop a tumour on their optic pathway which sends messages and information from the eyes to the brain. These brain tumours are called OPG (Optic Pathway Glioma)   

Our story

Eashan started to have some vision problems shortly after starting school after a couple months of opticians , trialling glasses and referrals his eyesight started to deteriorate suddenly . I took him straight to A & E and they organised an emergency MRI , a couple of days later on New Years day we received the news that Eashan has a brain tumour and later a diagnosis of NF1 with an OPG and as such he has a severe sight impairment.

Due to the placement of the tumour its too risky and fragile to be operated on , so Eashan started his 18 Month treatment of chemotherapy.

Eashan doesn't need much of an introduction, and everyone  that has met him , usually have a friend for life! He is an absolute chatterbox, has a million questions and the kindest heart . Even during our long stay in hospital at the very beginning he spent his time making others laugh and asking all the nurses and Drs if they had a good Christmas.

We are at the hospital most weeks , sometimes several times a week and this will continue throughout his treatment. One thing Eashan loves to do is chat , and chat some more !so he has made many friends on the Oncology ward (E39 and E40).

The staff on the children's oncology ward are INCREDIBLE ,  they have made life that little bit easier for ourselves and so many other families going through the hardest of times . We can not thank them enough.

Every staff member that meets Eashan remembers him and the little things that make him smile , whether that is giving his Hulk or spider man scores for his blood pressure , taking extra time explaining things, answering his questions ( he often has a lot!)  and just going that extra mile. 

The other children we have met on the oncology ward are amazing  , it really makes you see life in a different way , they are absolute fighters. Its often our children we see being so brave , giving us the parents that extra strength.  . 

Thank you to the parents and children we have met on E39 and E40 , you were all really there for us in those early days , you just got it , no explanations needed  and to all the nurses and Doctors you really are exceptional.

The funds raised are going directly to the wards that have cared and continue to care for Eashan and all the other children and their families .

So  my Eashan , a real life superhero 'Leader of the brave boys (and girls)' .If you can go through this journey then I sure as hell can get to that finish line. I will be thinking of you every step I run. My incredible brave, quirky , funny , forever questioning , clever and kind Eashan. We love you so much .

Thank you for reading

Jen