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.

She has had one Zoom meeting with her friends from her additional support needs Youth Group.

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.

Filter News

Mindful Parenting Study
Research study: Mindful Parenting Programme for parents or carers of children aged 4-16 living with a visible difference
Read More
Adam Buxton and some colleagues - NTUK Comedy Night
Join us at the Union Chapel, London on Thursday 24th November for the latest comedy night to celebrate 40 years of NTUK
Read More
We know 26, 500 people who need your help
To expand our Specialist Neurofibromatosis Network, we need to continue raising awareness of what we do
Read More
The New National Helpline
The National Helpline is expanding to Monday, Wednesday and Friday, from early October
Read More
London Marathon 2022
Congratulations to our 2022 London Marathon runners - thank you from the NTUK team
Read More
Hannah’s NF1 story
9 year old Hannah is running the Junior Great North Run, so other children with NF can also have access to doctors & nurses
Read More
Sam’s Marathon
Sam, our Specialist NF Nurse for Merseyside & the North West, is running the London Marathon - her very first Marathon!
Read More
NF Patients Community Day
The NF Patients Community Day is on Sunday 9th October 2022 - register to attend virtually
Read More