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.

Jessica’s Amazing Fundraising Efforts

Have a read about the incredible 7 year old fundraising girl who is supporting research into NF1

Smiling Through

Have a read about Melanie and her courageous young son Emilio (NF1) and the impact NTUK has had on their lives.

Our 2019 Christmas Card Competition Winner!

See our Christmas Card winning illustration here

Helen’s Story

Have a read of loving Mum Helen's Story and how she cares for her wonderful daughter Gaby (NF1)

Looks and Life: A summary of the study

Have a read about the findings from the UWE's "Looks and Life" Study

Kate’s Story

Have a read of Kate's inspiring story including the introduction of her beautiful daughter Esme, who has NF1, into the world.

Insights into the work of our support specialists from Mel Murrell

Meet one of our Support Specialists Mel Murrell and read about her impressions on her first year in the role

World At Her Feet

Christina has wrtiten a blog partly about living with NF1 and partly about her travels. Find it here:

Arooj: The Fashion Blogger with NF

Arooj Aftab, 22, is an influencer, with NF1, who is known for her baggy fashion style

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.