Neither of us have run a  marathon before but we have taken on the challenge of the TCS London Marathon 2024 to support Nerve Tumours UK and their mission to support people with as well as research on a condition which our son was diagnosed in January 2022. They provide crucial support to people living with Neurofibromatosis: a genetic condition that causes nerve tumours. Neurofibromatosis (or NF for short) can be passed on through familial generations due to its genetic dominance but can equally occur spontaneously with no family history, as is the
case with our son Eashan. 

Our son Eashan has recently come to the end of his 18 month chemotherapy journey after unexpectedly being diagnosed with Neurofibromatosis Type 1 (NF1) on New years day 2022 when an emergency MRI revealed a brain tumour on his optic nerve which was causing him to lose his eyesight. If we were aware of the conditions and the obvious signs of NF1, things could have been so different and we would have been able to pre-empt his sight loss. It has been a tough 18 months of chemo treatment which has returned some of his eyesight but he will now need support and monitoring throughout his life to manage his optic pathway tumour and mitigate any others that may appear. 

So now that he has finished chemotherapy we wish to raise awareness of the condition as well as work with the leading charity
that supports people with NF to raise broader awareness, offer critical support for people living with the condition and support further research in the condition. Very little is known about how it manifests and why it does so at such a young age.

We really hope you can support us while we take on the London Marathon challenge in 2024, sweat our guts off, coordinate training runs around our children and hopefully make our son proud of us.

We will be thinking of Eashan each step we run (all 26.2 miles, which is apparently approximately 55,334 steps)

You can read more about Eashan’s story here:

https://nervetumours.org.uk/news/eashans-nf1-story

We thank you so so much for your support.

Jen and Brij