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
Shine A Light on Neurofibromatosis now streaming on The Disorder Channel
Find out how we are bringing NF Awareness to people's homes
Read MoreBest Film Nomination “Shine A Light on Neurofibromatosis” PM Society Digital Awards
Join the awards ceremony virtually this Wednesday 16th September
Read MoreAct it Out Prototype App Trial
If you are experiencing difficulties related to NF & 'Visible Difference' - find out how you can take part
Read MoreThe Virgin Money London Marathon Goes Virtual
Sign up for your Virtual London Marathon experience Sunday 04.10.2020
Read MoreAccessible Online Meetings for those with hearing impairment
Frances Harris talks to us about the difficulties faced by those with NF2 & hearing loss communicating online and solutions
Read MorePipers to Paris - Ride for Neurofibromatosis
Read all about Mr. Cohen's epic 230 mile bike ride to help support those affected with Neurofibromatosis in the UK
Read MoreArtificial Intelligence & Disability Recruitment
Creating fair processes for people with disabilities by the HR teams that are using artificial intelligence/face recognition
Read MoreIt’s a Kind of Magic
Mike Brennan has had to deal with the stigma as well as the symptoms of NF1, which he has battled since he was a young child.
Read More