Evie’s NF1 story

Evie was diagnosed with NF1 aged 3, following an appointment with NTUK Specialist NF Nurse Rebecca Rennison. Rebecca discussed with us the option of genetic testing for both of our children, due to Evie’s dad having a diagnosis of spontaneous NF1.

After noticing a café au lait mark on her forehead when she was around 1 year old, we decided to seek further support around testing which resulted in a diagnosis for Evie. Evie has since developed another café au lait mark on her back. Evie’s elder brother Riley does not have the condition. 

Evie is a sassy, happy, wild child who brings joy to every day and to everyone she meets. She’s loud, chaotic and has surplus energy but lives life to the full.

In May, Evie's mam Emily and elder brother Riley are fundraising for Nerve Tumours UK, by doing 5k every day for 26 days in May for the 26,500 people affected by NF1 in the UK.

We have also reached out to Evie and Riley’s primary school who have now planned an NF Awareness Day, where the children will learn about NF and will attend school wearing green or blue. They have shown great support and we hope this will become a yearly event to raise awareness and funds for Nerve Tumours UK!

If you have any questions about NF, please contact our Helpline and speak to our Specialist NF Nurse/Advisors. We offer support to schools with our iNForm Your School information pack.