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.
Filter News
_3_800_600_s_c1.jpg)
Lynne Highy joins our team of Specialist NF Advisors
Read all about the newest addition to our team.
Read More
NF Academy 2025: Georgia’s Blog
NTUK ambassador Georgia Baum shares her transformative experience of attending the NF Academy 2025 in Barcelona
Read More
Craig’s story
Craig describes his mosaic NF2 related hearing loss, and how a cochlear implant & hearing aids have changed his life
Read More_6_800_600_s_c1.png)
George’s Schwannoma Story
George shares his experience of being diagnosed with a schwannoma and why he's lacing up for NF awareness.
Read More_6_800_600_s_c1.png)
JoJo’s NF1 Story
JoJo shares how her NF1 journey has affected her; how her pain and loss have become foundations of courage and resilience.
Read More
Tristan’s Story: Hope & Resilience
Discover Tristan's NF1 story: Finding home, hope & the power of sport.
Read More
10 mile walk for Lily
Read more about the 10 mile sponsored walk for Lily, organised by Claire, with her nursery team, family & friends taking part
Read More_2_800_600_s_c1.jpg)
NF & Sport: Joy’s Journey
Find out more about the impact of sport on Joy's NF1 journey & how running changed her life forever.
Read More_5_800_600_s_c1.jpg)
Safiya’s NF1 Journey
Find out more about Safiya & how her NF1 diagnosis has made her 'determined to make a difference'.
Read More