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
Team NTUK London Marathon 2023
Meet some of our runners and read their inspiring marathon motivation stories
Read MorePip’s London Marathon
Pip describes life with NF1 & limited vision and his motivation to run the London Marathon
Read MoreThe Scottish Parliament Rare Disease Day Online Reception 15/03/2023
NTUK attended the Scottish Parliament Rare Disease Day online reception
Read MoreLiz’s NF1 story: This is the real me
Liz describes growing up with NF1, difficulties at school, spinal surgery and raising awareness by writing a poem about NF.
Read MoreSupport Derry’s and Dan’s Marathon Run for NTUK
Dan and Derry will be taking on the London Marathon in support of Nerve Tumours UK
Read MoreRagbir’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 More