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
Freddie’s motto: “Be kind, be brave and be happy”
Meet Freddie: diagnosed with NF1 as a baby, he loves performing and has a role in soon to be released film Christmas Karma
Read More
Understanding Neurofibromatosis Type 1 (NF1): A surgeon’s thoughts
Christopher Duff is a plastic surgeon working with NF1 patients in Manchester, he answers some common questions from patients
Read More
Understanding NF1: A guide to skin neurofibromas and their treatment
This guide is for people with NF1 and explains what neurofibromas are and what treatments might help.
Read More
Olivia’s NF1 story
Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses
Read More
Revisiting the GCSE class of 2020
Five years on from their GCSEs, we speak to Ella, Thomas and Noah to discover what they have been up to
Read More
Benjamin’s NF1 story
11 year old Benjamin has NF1 and is the inspiration for his family's fundraising
Read More
Lynne Highy joins our team of Specialist NF Advisors
Read all about the newest addition to our team.
Read More
NF Academy 2025: Georgia’s Blog
NTUK ambassador Georgia Baum shares her transformative experience of attending the NF Academy 2025 in Barcelona
Read More