Sarah’s Story as told by her Father Clemence
18 May 2020
Hello, I have a daughter, Sarah who is 17 years old. Sarah has Neurofibromatosis type 1 which has lead to mild learning disabilities, affecting her speech and communication but she has been at mainstream school with some help.
Sarah also has scoliosis, causing her spine to fuse at aged 9. As well as this she also has plexiform neurofibromas on her brachial plexus and a large one on her right elbow. Sarah always tries her hardest to succeed in what she does. School had not been easy especially as this was her last year and all her transition need had to be cut short. Sarah really wanted to go to college and become a baker but due to the physical side and communication problems Sarah has she did not get in to the course she chose.
Now at home with her family Sarah spends her day on her three wheeler bike in her garden and baking.
![](/images/common/Sarah_on_three_wheeler_1024x768.jpg)
She has had one Zoom meeting with her friends from her additional support needs Youth Group.
![](/images/common/Sarah_Youth_Group_1924x768.jpg.png)
Sarah would like to one day work in a small bakery, their is a place in Edinburgh where we live nearby that teaches people with additional support needs to bake in a professional kitchen so hopefully Sarah could go there.
Sarah shining a light on herself to highlight her Neurofibromatosis type 1 condition on May 17th 2020.
![](/images/common/Sarah_Shine_A_Light_on_Neurofibromatosis_-_1024x768.jpg)
Filter News
![](https://nervetumours.org.uk/images/made/images/common/Runderpants-2019Page-Preview-800-x-500-px_800_600_s_c1.png)
Runderpants Bangor 2019
Have a read about the unqiue but extremely successful event that was Runderpants Bangor 2019
Read More![](https://nervetumours.org.uk/images/made/images/common/FEI-USEPage-Preview-800-x-500-px_800_600_s_c1.png)
Nerve Tumours UK joins up with Face Equality International’s Alliance
We have joined Face Equality International Alliance in an attempt to end discrimination to those with facial differences
Read More![](https://nervetumours.org.uk/images/made/images/common/Bronte-website-headerPage-Preview-800-x-500-px_800_600_s_c1.png)
Bronte’s Story
Have a read of Bronte's story about how she continues to enjoy living her incredibly adventorous and ambitous life
Read More![](https://nervetumours.org.uk/images/made/images/common/BristolPage-Preview-800-x-500-px_800_600_s_c1.png)
Bristol NF1 Information Day 23/03/2019
The day is designed so that our specialists can give you information and insight about NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/adam-buxton-comedy-night-Page-Preview-800-x-500-px_800_600_s_c1.png)
Adam Buxton Comedy Night in aid of Nerve Tumours UK
Our charity comedy night was certainly nothing short of a success. Find out exactly what went down here:
Read More![](https://nervetumours.org.uk/images/made/images/common/Megan-Crews--meet-meganPage-Preview-800-x-500-px_800_600_s_c1.png)
Meet Megan
Megan Crews is a 30 year-old special needs tutor in Salisbury. She recently spoke out in The Sun.
Read More![](https://nervetumours.org.uk/images/made/images/common/Fabio-researchPage-Preview-800-x-500-px_800_600_s_c1.png)
How does your visible difference affect you?
Researchers would love to understand your experience of how a visible difference affects your daily life
Read More![](https://nervetumours.org.uk/images/made/images/common/GABYPage-Preview-800-x-500-px_800_600_s_c1.png)
Gabriella’s Story
"I believe everyone should think the same and be kind to people however they look and whatever condition they have."
Read More