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
Richard & Diana’s 1,000,000 metre new rowing challenge
Diana & Richard have taken on a 1,000,000 metre rowing challenge in 100 days to raise funds & awareness
Read More
A Message from our Charity Director
A message from Karen, our Charity Director, on looking forward to a special 2022
Read More
Childhood Neurological Conditions Survey Part 2
Find out how you can help shape the future of treatment for Childhood Neurological Conditions such as Neurofibromatosis
Read More
Graham’s Super Nine Shines A Light on NF
Graham's 7 year old great-nephew Nathan is his inspiration for his epic challenges to fundraise for NTUK
Read More
Meet Siobhan, our new Specialist Advisor for Northern Ireland
Meet Siobhan from Northern Ireland, our newest Specialist Advisor
Read More
Poppy’s NF1 story
Poppy describes growing up with NF1 and fundraising for future research & treatment
Read More
Meeting Alpha FX
NTUK Head Office visited Alpha FX to give a presentation on our work & how their support & donations help the NF Community
Read More
Nerve Tumours UK joins the Neurological Alliance
A coalition of over 70 organisations working together to transform quality of life for people with neurological conditions.
Read More