Dayna’s Story
12 August 2019
Dayna's Story
Shortly after I was born it was noticed that my eye kept bulging out after every nap I took. This led to a number of tests being carried out on myself which lead to my diagnosis of Neurofibromatosis Type 1, and also the identification of a brain tumour on my optic nerve. I was then treated with chemotherapy, in which I had to have a port fitted for the treatment.
Sadly, this reduced vision in my left eye and made me go blind in my right when I was only 2.
At 6 years old a tumour was found on my ankle and I had to have “neurofibromatosis specialist surgery”.
Then at 12 I was diagnosed with a brain tumour on the temporal lobe, which led to emergency surgery being needed, this severely affected my memory for a long time.
At the age of 17 I was then diagnosed with a tumour in my back which is currently being monitored by my specialists alongside the tumour that was found on my vagus nerve.
A further two complications from my NF1 is that I have developed both breathing and digestive problems as well.
I'm 20 and have had Neurofibromatosis type 1 since I was 2.
– Dayna"However, despite all this I still maintain all my ambitions and dreams, which I know I can achieve. One of these dreams is to help as many people with Neurofibromatosis as possible, and to possibly help with any further tests and research in the future. "
Filter News

“Charity Shave Off” for NF in Northern Ireland
Janice and her family recently held a charity shave off in Northern Ireland. Find out more about the event here:
Read More
Blackpool Magic Convention 2020
Find out more about the convention in aid of NTUK and how you can get involved here:
Read More
Reflections on 2019
Check out our reflection on what we feel was an incredibly succesful 2019 for the charity:
Read More
Helen’s Story as told by her Mum Pauline
Due to her NF1, Helen has faced several struggles. Mum Pauline has openly shared her daughter's experiences with us here:
Read More
Nicola’s NF2 Journey
Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:
Read More
Making the Future of Work inclusive of persons with disability
Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace
Read More
The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing
Find out more about the debate recently undertaken at The Royal Society here:
Read More
Appearance Matters: Prof Diana Harcourt and Maia Thornton
Find out both Diana's and Maia's views on their work and the importance of their work for people with NF:
Read More