Helen’s Story

23 August 2019

Helen's Story

We hadn’t thought anything of Gaby’s café au laits when she was a baby, and it was very scary when Gaby was first diagnosed. When we were confronted with the reality of her first tumour, my world hit the floor. I feel I’m much stronger now. A few years ago, I decided to run the marathon on behalf of Nerve Tumours UK (then called The Neuro Foundation), and I raised a considerable amount of money. That gave me the strength to feel: I’m going to manage this, this is not going to manage me.

I know we can’t cure Gaby’s NF1, but we can manage it. The school have been very supportive.

I go in at the start of every year to talk to them about where Gaby is with her condition. The school couldn’t be kinder and nothing’s a problem for them, for example, that Gaby has to have a lot of time off for hospital appointments.

Nerve Tumours UK have been a tremendous support. They’re always there if we need them. I’ve felt very strengthened by the opportunity to share experiences with other families I’ve met through NTUK, and through NF Mums Rock, which is a worldwide closed Facebook group.

Meet Clare

Clare is a Specialist NF Nurse based at Ryegate Children's Centre at Sheffield Hospital, covering the South Yorkshire region

Tracey, Specialist NF Nurse

Meet Tracey. She is based in Southampton & covers Hampshire, Dorset, West Sussex (part), Wiltshire and the Isle of Wight.

Meet Carolyn

Specialist NF Advisor Carolyn is based in Birmingham and covers the West Midlands, Shropshire and Staffordshire.

Today is Giving Tuesday

Call out by Karen Cockburn, Charity Director, to donate and support the NF Community

Runderpants fun run

Get your Runderpants here! Set up a fun run wearing some special fundraising pants

Meet Sarah, our new Specialist NF Nurse

Sarah will be based in Leeds, supporting families across Yorkshire and Humberside

Meet Charmaine, Our New Specialist NF Nurse

Olivia’s NF1 story

Olivia and mam Kelly share their NF1 story, highlighting school achievements and support from NTUK Specialist Nurses

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.

Helen’s Story

Helen's Story