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

Meet Clare
Clare is a Specialist NF Nurse based at Ryegate Children's Centre at Sheffield Hospital, covering the South Yorkshire region
Read More
Tracey, Specialist NF Nurse
Meet Tracey. She is based in Southampton & covers Hampshire, Dorset, West Sussex (part), Wiltshire and the Isle of Wight.
Read More
Meet Carolyn
Specialist NF Advisor Carolyn is based in Birmingham and covers the West Midlands, Shropshire and Staffordshire.
Read More
Today is Giving Tuesday
Call out by Karen Cockburn, Charity Director, to donate and support the NF Community
Read More
Runderpants fun run
Get your Runderpants here! Set up a fun run wearing some special fundraising pants
Read More
Meet Sarah, our new Specialist NF Nurse
Sarah will be based in Leeds, supporting families across Yorkshire and Humberside
Read More
Meet Charmaine, Our New Specialist NF Nurse
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
Eashan’s NF1 story
'Why Run'... Eashan was diagnosed with NF1 after losing his eyesight when he was 5. His mother Jen tells his story.
Read More