Grace’s NF1 story - Nothing stops me

10 January 2022

My name is Grace, I am 18 years old. I was diagnosed with Neurofibromatosis Type 1 when I was 2 years old.

For me it has resulted in a few complications, such as an optic nerve glioma, scoliosis of the spine, café au lait marks and neurofibromas.

I had 18 months of chemotherapy to shrink the tumour behind my left eye, which unfortunately left me blind on that side. I’ve been in and out of hospital a lot over the years, with many MRI scans and appointments, but I’ve never let this stop me from doing anything.

Growing up, I was always active and had a love for swimming and triathlon. Due to my visual impairment, I was able to compete in the para category in my local triathlon club events and swimming galas.

My biggest accomplishment within sport was when I competed in the British Blind Sport National swimming championships in Birmingham, collecting a series of gold and silver medals over the years.

I am currently in my first year at university studying Health and Social which I hope will lead me into a career in which I can care for people, as I know personally how important the health and social care sector is and what a difference it can make.

Tristan’s Story: Hope & Resilience

Discover Tristan's NF1 story: Finding home, hope & the power of sport.

10 mile walk for Lily

Read more about the 10 mile sponsored walk for Lily, organised by Claire, with her nursery team, family & friends taking part

NF & Sport: Joy’s Journey

Find out more about the impact of sport on Joy's NF1 journey & how running changed her life forever.

Safiya’s NF1 Journey

Find out more about Safiya & how her NF1 diagnosis has made her 'determined to make a difference'.

The Boy Who Played Cricket

Take a look behind the scenes of team NTUK's visit to the 'The Boy Who Played Cricket' opening.

Ella’s Story

Ella shares her insights into campus life with NF; her victories & hurdles & the importance of self- belief.

Oliver’s Blog

Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma.

3BM & Fusion’s Purple Forum nominate Nerve Tumours UK as their Charity of the Year

Take a look inside Purple Forum and how they're raising awareness and funds for the NF community.

George, Alisya’s & Leo’s NF1 Story

Find out how George and his team at Rolls Royce are raising NF awareness because of NF hero Leo.

Grace’s NF1 story - Nothing stops me

My name is Grace, I am 18 years old. I was diagnosed with Neurofibromatosis Type 1 when I was 2 years old.

Growing up, I was always active and had a love for swimming and triathlon. Due to my visual impairment, I was able to compete in the para category in my local triathlon club events and swimming galas.

My biggest accomplishment within sport was when I competed in the British Blind Sport National swimming championships in Birmingham, collecting a series of gold and silver medals over the years.