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/Nicole_370x280_800_600_s_c1.jpg)
Nicole’s NF1 story & skydive
Nicole shares her NF1 journey and her motivation to inspire children with disabilities to achieve whatever they want to do
Read More![](https://nervetumours.org.uk/images/made/images/common/photo_collage_370x280_800_600_s_c1.jpg)
Sarah’s NF1 story & Langmead fundraising
Sarah describes her daughter Hannah's NF1 journey and organising a corporate charity day fundraiser at Langmead Herbs
Read More![](https://nervetumours.org.uk/images/made/images/common/Molly__Alfie_370x280_800_600_s_c1.jpg)
Molly & Alfie
Mollie has NF1 - her big brother Alfie & friend Kaelan are running to raise awareness & funds for NTUK
Read More![](https://nervetumours.org.uk/images/made/images/common/Resilient_Youth_with_NF_Flyer_July_2022_370x280_800_600_s_c1.jpg)
Study - Resilient Youth with NF
Adolescents with NF (12-17 years old) are wanted for an Online Harvard research project
Read More![](https://nervetumours.org.uk/images/made/images/common/FB_IMG_1658509844271_370x280_800_600_s_c1.jpg)
Jamie’s NF1 story
Jamie was inspired by reading NTUK stories and is now using his own experiences to help raise awareness of Neurofibromatosis
Read More![](https://nervetumours.org.uk/images/made/images/common/image_1_370x280_800_600_s_c1.jpg)
CAR Relationships study
CAR survey: support materials for adults with appearance-affecting conditions, focussed on intimacy & romantic relationships
Read More![](https://nervetumours.org.uk/images/made/images/common/Glasgow_collage_370x280_800_600_s_c1.jpg)
Glasgow Comedy Night
Last night was the turn of Glasgow's The Stand Comedy Club to host the NTUK Comedy Circuit 2022
Read More![](https://nervetumours.org.uk/images/made/images/common/Newcastle_comedy_preview_image_370x280_800_600_s_c1.jpg)
Newcastle Comedy Night
The Stand Comedy Club in Newcastle held a great night of fun and laughter
Read More![](https://nervetumours.org.uk/images/made/images/common/Lottery_Webpage_370x280-preview_1_800_600_s_c1.png)
Nerve Tumours UK Lottery
Read how the NTUK Lottery helps make a difference to the NF Community
Read More