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

Statement by Rachel Jones & Rebecca Rennison our Specialist Neurofibromatosis Nurses UK
A statement on coronavirus by Rachel Jones & Rebecca Rennison specialist Neurofibromatosis nurses in the North East & Cumbria
Read More
Statement by Samantha Gaden our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Samantha Gaden specialist Neurofibromatosis nurse in the North West
Read More
Statement by Melanie Murrell our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Melanie Murrell specialist Neurofibromatosis nurse in the West Midlands
Read More
Statement by Carolyn Smyth Lead Specialist Neurofibromatosis Nurse UK
A Statement on Coronavirus by Carolyn Smyth Lead Specialist Neurofibromatosis Nurse UK
Read More
COVID - 19 News from Children’s Tumour Foundation our partners in the US
Covid - 19 News from Children's Tumour Foundation our partners in the US
Read More
Working For The NF Community and Helping to Protect and Save The NHS
Coronavirus is impacting the NHS heavily including our Specialist NF Nurses; help us support them, find out how
Read More
Leighton Linslade Rotary Club hosts Brains of Leighton Buzzard Quiz
Leighton Linslade Rotary Club hosts Quiz in aid of Neurofibromatosis type 2, find out more here
Read More
Postponed: Medicine and Me: Living with Nerve Tumours at the Royal Society of Medicine
Postponed: Find out more about the event at the Medicine & Me event at the Royal Society of Medicine here:
Read More