Charlotte & Evie’s story

Our journey with NF1 started in October last year. Our 4yr old daughter Evie started to present a slightly protruding eye which on occasion would look off to other directions. We initially thought it was “lazy eye”. We took her to our local hospital and they could see she had an extremely damaged optic nerve in her right eye.

Off she went for an MRI a few weeks later and later that day we received a phone call that we were not expecting….Evie was blind in her right eye due to a large tumour on her optic nerve and also a small one was growing on her left eye. We were then told she had Neurofibromatosis Type 1. 

It was just a whirlwind after that!

She was referred to Nottingham QMC and within one week she had her port fitted and started on an 84 week Chemotherapy treatment plan which she will finish in June 2025. 

Having never heard of NF1 and have not been affected by it in either family, we started researching. We came across Nerve Tumours UK and it was such a relief to know we were not alone. It also provided great information on the disease which was something we needed and to be honest so far, no one had provided.

We were given lots and lots of advice and support surrounding the chemotherapy treatment and many cancer charities have been amazing. However, for the NF1 diagnosis it has been pretty non existent! 

We wanted to fundraise for Nerve Tumours UK to make people aware of this rare disease and to help continue the great work they do for the NF1 community. Myself and my friends are taking part in the Lincoln 5k inflatable challenge on the 13th July and Evie's daddy is hoping to run a local 10k in June. 

Evie is our inspiration and she rarely moans, takes everything in her stride and always has a smile for everyone she meets!

She will do anything for a sticker… the nurses at QMC call her the 'sticker queen'! She loves school and her teachers are just amazing! So supportive and just like second mums to Evie. 

Life has changed for us, lots of travelling to QMC (1hr 30mins) from us for weekly treatments and other appointments. Due to her treatment she often has to be hospitalised for infections and has recently had to have a blood and platelet transfusion. 

Of course more importantly it has changed for Evie and also affected her older sister Ava. We are often having to stay over at hospital and friends and family picking Ava up and looking after her after school. 

We are not sure where our NF1 journey will take us but for now we will continue to deal with each day as it comes and Evie will continue to be the littlest hero we know!

Share YOUR story for Rare Disease Day 

Nerve Tumours UK joined in this year's Rare Disease Day theme -"Facts behind the Stories", and highlights the diverse outcomes and impacts that NF can have on each individual and their loved ones.  Follow in Charlotte's footsteps and share YOUR story by emailing info@nervetumours.org.uk. 

This is one of the stories that we have received for Rare Disease 29.02.2024 Day 2024. Help us make #MakeNFVisible.