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/DSC_0096_London_Marathon_2019_-_Group_photo_preview_website_370x280_800_600_s_c1.png)
A Big “Thanks” for Team Nerve Tumours UK running the London 2020 Marathon!
We want to give a great big thank you to all of you who took part in this year's Virtual London Marathon!
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK_video_thumbnail_high_res_370x280_800_600_s_c1.png)
How To Use Lipspeakers – Support For Those Affected By Hearing Loss
Frances Harris at Bridge Lipspeaking shares how lipspeaking can help those with hearing loss or total deafness caused by NF2
Read More![](https://nervetumours.org.uk/images/made/images/common/Oxford_University_(Naomis_photo)_370x280_800_600_s_c1.png)
Living with Neurofibromatosis Type 1: An Anthropological Study
Get involved and share your story to help increase cross-cultural understanding and awareness of NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/Nimo_NF1_Story_370x280_preview_800_600_s_c1.png)
Nimo’s NF1 Story
Read Nimo's incredible journey of coming to terms living with NF1 & how Nerve Tumours UK has changed her life for the better
Read More![](https://nervetumours.org.uk/images/made/images/common/Georgia_Schwannoma_Story_370x280_800_600_s_c1.png)
Georgia’s Schwannoma Story
Read Georgia's inspirational Schwannoma story and how she had to fight for her diagnosis
Read More![](https://nervetumours.org.uk/images/made/images/common/Screenshot_2020-09-30_Changing_Faces_»_New_research_on_experiences_of_men_with_visible_differences_370x280_800_600_s_c1.png)
Voices of Visible Difference #YoureNotAlone Men’s Campaign
Two-thirds of men with visible difference are affected in their day to day life. Read more
Read More![](https://nervetumours.org.uk/images/made/images/common/Childhood_Neurological_Conditions_Survey_Website_Header_370x280_800_600_s_c1.png)
Childhood Neurological Conditions Survey
Find out how you can help shape the future of treatment for Childhood Neurological Conditions such as Neurofibromatosis
Read More![](https://nervetumours.org.uk/images/made/images/common/Karen_Portrait_Colour_370x280_2_800_600_s_c1.jpg)
We’re Here for You, Our NF Community.
A big thank you from Karen our Charity Director - your support has been amazing!
Read More![](https://nervetumours.org.uk/images/made/images/common/Global_Genes_Virtual_event_370x280_800_600_s_c1.jpg)
Global Genes LIVE!
Join Global Genes September 15-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit.
Read More