On New Year’s Day 2022, myself and my wife Diana will be doing a 1,000,000 meter indoor rowing challenge averaging 10km a day between us for 100 days for Nerve Tumours Uk.

This is very close to our hearts, as our 4-year-old daughter Ellie has a genetic condition called Neurofibromatosis Type 1 (NF 1)

Ellie has been diagnosed with an extra-large plexiform tumour that innovates the median and ulna nerve. Unfortunately, she has such a complex case that it can’t be surgically removed, as it originates inside the nerve, so any interventions would cause serious nerve damage if that wasn’t enough for her. She recently was also diagnosed with an optical glioma brain tumour. And we are also waiting on a full-body MRI in Oxford. And specialist appointments in London.

It has been devastating how many hospital appointments and interventions she’s already needed in such an early stage of her life. And how difficult it is to be told: “watch and wait”.

This has been hard to hear when my wife recently found out her mum had Neurofibromatosis Type 1. She sadly passed away due to a brain tumour and lung cancer when Diana was 13 years old.

It raises so many questions…. Did this start with an optical glioma? How will this affect Ellie’s life expectancy? Is this treatable? Will Ellie eventually lose the function of her arm?

Ellie & Diana both have multiple café Au lait patches, which we thought were birthmarks. We didn’t know that they could be a sign of anything else until we went for a biopsy in November 2020.

My wife had also had interventions, including the surgical removal of a neurofibroma on her hip.

The condition causes tumours to grow along the nerves, on the skin and inside the body. As we cannot physically help her, we wanted to raise money and awareness.