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
Ragbir’s London Marathon
Ragbir is the Paediatric Lead for NF1 in Leeds and is running the London Marathon
Read MoreRare Disease Day 2023
NTUK joined in with Rare Disease Day 2023, helping raise awareness of how better coordination of care can improve lives.
Read MoreAshley’s NF1 story
Ashley loves red pandas, he's a 32 year old IT Specialist and has NF1. He is running a half marathon to raise NF awareness
Read MoreGuy’s & St.Thomas’s Monthly Care Awards
NF paediatric nursing team, Mandy and Katrina win the Guy’s and St Thomas’ Hospital November CARE Award 2022
Read MoreCost of Living Crisis - Initiative
NTUK have co-signed an open letter to the Chancellor of the Exchequer on the cost of living
Read MoreLiving with NF1: psychological impact & experiences
Research: Understanding the reality of the NF1 journey from diagnosis to daily life, and the emotional impact it has
Read MoreKian’s NF2 Blog
Kian shares his NF2 journey and his inspirational path - training to swim in the para-olympics
Read More