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

Teenage Transition Day, Guy’s Hospital NF Centre
Guy's Hospital Neurofibromatosis Centre celebrate the success of their first teenage day since COVID
Read More
India’s NF2 story & Jasmin’s ultramarathon
India describes her NF2 diagnosis & surgery - her older sister Jasmin is fundraising for NTUK with a 50k ultramarathon!
Read More
New ways to treat NF1 tumours with existing drugs
Researchers at the Living Systems Institute, University of Exeter, UK are researching new ways to treat NF1 tumours
Read More
Easter Message
A message from Karen, our Charity Director, wishing you a very Happy Easter!
Read More
Equality, Diversity and Inclusion in the Workplace
Nerve Tumours are here to support you in the workplace: iNForm; workplace equality research & creating an inclusive workplace
Read More
Wayne’s World of Marathons
Read about Wayne's world: marathons, running a wedding fayre business with wife Leanne and their son Harley who has NF1
Read More
Team NTUK London Marathon 2023
Meet some of our runners and read their inspiring marathon motivation stories
Read More
Pip’s London Marathon
Pip describes life with NF1 & limited vision and his motivation to run the London Marathon
Read More