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
Everybody is born a Champion
NTUK & RBH's 3rd campaign features GB Paralympian Thomas Young, who has NF1, and celebrates those living with NF
Read MoreMario Antona’s NF2 Story
In memory of his dad, who passed away from NF2, Mario cycled 500 km across the Pyrenees to raise funds for Nerve Tumours UK.
Read MoreEva-Hope’s NF2 story
Tahlia describes how the family felt after receiving daughter Eva-Hope's NF2 diagnosis
Read MoreMy Neuro Survey 2024
Fill out #MyNeuroSurvey and help to improve treatment, care and support for everyone affected by neurological conditions.
Read MoreVTCT Foundation Showcase
Find out about this event which showcases projects and research supported by the VTCT Foundation
Read MoreCrazy Nanna Hazel & Evie
4 year old Evie's NF1 diagnosis impacted the whole family. Hazel shares Evie's story from a grandmother's perspective
Read More2024 Friedrich von Recklinghausen Award
Professor Rosalie Ferner, Trustee and Member of the Nerve Tumours UK Medical Advisory Board receives this year's award
Read MoreBecome a Trustee
Nerve Tumours UK are looking for at least two new trustees to join the Board. Find out more
Read More