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.
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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
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Shine a Light on Neurofibromatosis
World Neurofibromatosis Awareness Day - May 17th. Help us raise £ 26,500 for 26,500 people in the UK who have nerve tumours.
Read More![](https://nervetumours.org.uk/images/made/images/common/jem-nd-richPage-Preview-800-x-500-px_800_600_s_c1.png)
Jem Musselwhite and Rich White are fundraising by walking the Pilgrims’ Way
Jem and Rich are walking more than 100 miles to raise money for Nerve Tumours UK. Find out more here:
Read More![](https://nervetumours.org.uk/images/made/images/common/Rachel-Page-Preview-800-x-500-px_800_600_s_c1.png)
Meet Rachael
Rachael Reynolds is a 43-year-old mother of four, living in Huddersfield. She recently appeared in the Channel 5 programme,
Read More![](https://nervetumours.org.uk/images/made/images/common/Beijing-MarathonPage-Preview-800-x-500-px_800_600_s_c1.png)
Meet Our Two Marathon Runners from China
Meet our two runners from China who like to partake in marathons across the globe.
Read More![](https://nervetumours.org.uk/images/made/images/common/Andrew-Leak-MarathonPage-Preview-800-x-500-px_800_600_s_c1.png)
Andrew Leak is set to Complete 10 London Marathons!
Andrew Leak is about to complete his mission of running 10 London Marathon's! Find his press release here
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Meet Gemma
Gemma Barnish has NF2 and has recently gotten married, find out more about her intriguing life here:
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Kidz to Adultz Exhibitions
Kidz to Adultz offer a number of free exhibitions across the year to offer adivce and information on living with a disability
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Centre for Appearance Research at UWE want you to help test online support for people with Nerve Tumours
Centre for Appearance Research are looking for people with Nerve Tumours to test their new online support
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Support Specialists Challenges and Ambitions
Read more on both Rachel and Carolyn's views on their ambitions and challenges faced as Support Specialists
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