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
Looking Back, Moving Forward: A Message from Our Charity Director
Read More
Oliver’s Blog
Oliver Bromley shares some personal experiences of visible difference, and how education and kindness can reduce stigma
Read More
Ellen’s Story
Read Ellen's story, how she recovered from 'radical surgery' and why she's raising funds for NTUK.
Read More_800_600_s_c1.png)
Celebrating Trustees Week
It's National Trustee Week: Meet the people who keep NTUK moving.
Read More_800_600_s_c1.jpg)
Men’s Health Month
We're making sure that men with NF are prioritising their health, both in and out of the workplace.
Read More
Irfan’s Story
Irfan discusses his NF journey, how he transformed uncertainty and isolation into community and understanding.
Read More
Kelly’s Story
Find out how Kelly discovered her confidence after overcoming testing years at school and college.
Read More
Awareness Walks
Raise awareness with an organised walk within your community. We've put together some pointers to help you with planning.
Read More
Meena’s Awareness Raising Coastal Walk
NTUK trustee Prof. Meena Upadhyaya treks the Welsh coast to raise awareness of NF and rare diseases.
Read More