In September last year Nellie was diagnosed with a rare genetic condition called Neurofibromatosis type 1 (NF1) It was completely unexpected and came as a massive shock for us as a family.

This condition causes benign tumours (neurofibromas) to grow on nerves and they can present anywhere in or outside the body. Nellie has what is called a plexiform neurofibroma which grows on much deeper nerves in the body and it is on the left side of her head/ neck area and is compressing on quite a few blood vessels, veins and her trachea, although not causing too many problems yet thankfully. Neurofibromas can cause pain, Nellie is obviously too little to tell us if she’s in pain yet but we have many sleepless nights with her crying so can only guess it’s causing her some discomfort.

NF1 can also cause learning difficulties (unknown yet whether this will effect Nellie), can effect eyes but luckily hers are looking good so far and a multitude of other things! A big marker for NF1 is having 6 or more birth mark type spots which are called cafe au lait spots. Nellie has a couple but we expect she will probably develop more over time. These are completely harmless.

We are under many different consultants and she has regular MRIs under general anaesthetic which is traumatic in itself, mainly for us as we have to watch her be put to sleep. We are now waiting for a drug to be approved in the UK for her age group that will hopefully stop the growth of her tumour.

Anyone who knows Nellie will know this doesn’t stop her- she’s the happiest little poppet and lights up our lives! Our little NF1 warrior 🩵💚

I will be running the London Marathon next year to raise money for Nerve Tumours UK.

Nerve Tumours UK fund a Specialist Support Network comprising regionally based nurses, a national helpline and other initiatives to support children and adults in the UK diagnosed with NF: the medical group name for Neurofibromatosis Type 1 (NF1), NF2-related Schwannomatosis (NF2-SWN) and Schwannomatosis (SWN).

Nerve Tumours UK is the authoritative voice of NF in the UK and are solely financed by donations.

www.nervetumours.org.uk