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

Take a look at our new YouTube Channel
Take a look at our new YouTube channel and how to subscribe here
Read More
Meet Pearl
Pearl Kelly is 22, and has multiple complex problems caused by her NF1. Here she explains her outlook on life
Read More
Meet Joanna
Joanna is a lecturer in Mitochondrial Genetics at Newcastle University, she recently ran the London Marathon. Meet her here
Read More
New Research Into Appearance Altering Conditions
Maia Thornton PhD is looking for both parents and professionals who care for someone with an appearence altering condition
Read More
Adam’s Story
Adam has NF1 yet is still one of the most active and athletic people in the UK. Read about his fascinating story here:
Read More
Littlewood’s Charity Night
Have a read of yet another successful charity night hosted by the Littlewoods
Read More
Emily Owen Positive Role Model (Disability) Award Nomination
Vote for our tustee Emily Owen at this year's National Diversity Awards 2019.
Read More
Research Outlook with Prof Gareth Evans
Have a read on some of the latest research with Prof Gareth Evans
Read More
ICAEW Worcestershire Annual Dinner and Ball Fundraiser for NTUK
The ICAEW Worcestershire Annual Dinner and Ball raised an incredible amount for us this year! Find out more here:
Read More