Helpline 07939 046 030

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

Filter by Date
Category
Reset

Disfigurement equality at work - research

This research study by Queen Mary University, London, aims to improve workplace equality for people with disfigurements

Read More

RAISING THE ROOF: CHARITY COMEDY NIGHT IN AID OF NERVE TUMOURS UK

Join us in London on our first comedy night to celebrate 40 years of Nerve Tumours UK

Read More

NF1 stem cell research study

Julieta is carrying out stem cell research to understand brain development in those with NF1

Read More

Ava-Lily’s NF1 story

Ava-Lily is thriving at school despite various NF1 related difficulties - read her story

Read More

Westminster Virtual Rare Disease Day 2022 Reception

NTUK joined the annual international event aimed at raising awareness & highlighting the needs of people with rare diseases

Read More

Tate found his 2022 challenge!

Support Tate with his 2 day Shine A Light marathon!

Read More

Noreen’s story

Read Noreen's incredibly honest & moving blog about living with NF1

Read More

Ella’s editorial

Have a read of Ella's editorial as she shares her brave journey against NF1 with us!

Read More

Rare Disease Day 2022

Nerve Tumours UK joins events showcasing Rare Disease Day, hosted by the Genetic Alliance, on 28 February 2022

Read More