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.
![](/images/common/Helen-1Artboard-1.png)
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
![](https://nervetumours.org.uk/images/made/images/common/Christian_-_Ellie_Davis_Garden_Challenge_4_preview_800_600_s_c1.jpg)
Christian’s Story
Christian's Mum, Ellie, share's their journey with NF & why they decided to get involved with this year's Garden Challenge!
Read More![](https://nervetumours.org.uk/images/made/images/common/Tate_Shine_A_Light_Marathon_-_Finished_preview_800_600_s_c1.jpg)
Tate’s Shine A Light Marathon
Tate's mum shares his incredible journey with NF & why he took part in our Shine A Light Marathon to help others like him
Read More![](https://nervetumours.org.uk/images/made/images/common/Euro_NF_Conf_Rotterdam_Dec_2020_preview_800_600_s_c1.jpg)
Virtual Medical Meetings
Conferences in 2020 went online meaning the whole nursing team and key members of the head office were able to attend
Read More![](https://nervetumours.org.uk/images/made/images/common/Connection_Coalition_370x280_800_600_s_c1.jpg)
Connection Coalition
NTUK joined the Connection Coalition with the aim of working together to build strong relationships & connected communities
Read More![](https://nervetumours.org.uk/images/made/images/common/Rare_Disease_Festival_Website_preview_370x280_800_600_s_c1.jpg)
Rare Disease Day 2021
Nerve Tumours UK joined events showcasing Rare Disease Day hosted by the Genetic Alliance on 28 February 2021
Read More![](https://nervetumours.org.uk/images/made/images/common/NF1_Mummy_image_1_370x280_800_600_s_c1.jpg)
Kate, NF Mummy Community & Support
Kate tells us why she started the NF1 Mummy community group online
Read More![](https://nervetumours.org.uk/images/made/images/common/Alex_2-edit_preview_image_800_600_s_c1.jpg)
Alex’s story - Support in the Workplace
Alex Hetherington shares how iNForming his work colleagues about his neurofibromatosis created a supportive work environment
Read More![](https://nervetumours.org.uk/images/made/images/common/adam-whitlock-I9j8Rk-JYFM-unsplash_preview_800_600_s_c1.jpg)
A Colourful 5K Challenge
Read Emma's incredible awareness raising activities for NF in her local community, Liverpool.
Read More![](https://nervetumours.org.uk/images/made/images/common/Courtney_Garden_Marathon_World_NF_Day_2_preview_800_600_s_c1.jpg)
Our NF community share why they are taking on the World NF Day: 2.6 mile Garden Challenge!
Taking part in the World NF Day: 2.6 Garden Challenge - We want to hear from you!
Read More