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

No Laughing Matter
Tom is a former journalist, here he describes his journey from music journalism to comedy, & what his NF2 has to do with it
Read More
Shine A Light on Neurofibromatosis 2020
Find out what we're up to for our Shine A Light campaign this year!
Read More
Statement by Michael Fry our Chair of the Board of Trustees
The impact of the corona virus on the charity sector and Nerve Tumours UK's continued support to those affected by NF
Read More
NF1, Plexiform Neurofibromas Market Research Study
Find out more about an NF1, Plexiform Neurofibromas market research survey
Read More
Statement by Rachel Jones & Rebecca Rennison our Specialist Neurofibromatosis Nurses UK
A statement on coronavirus by Rachel Jones & Rebecca Rennison specialist Neurofibromatosis nurses in the North East & Cumbria
Read More
Statement by Samantha Gaden our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Samantha Gaden specialist Neurofibromatosis nurse in the North West
Read More
Statement by Melanie Murrell our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Melanie Murrell specialist Neurofibromatosis nurse in the West Midlands
Read More
Statement by Carolyn Smyth Lead Specialist Neurofibromatosis Nurse UK
A Statement on Coronavirus by Carolyn Smyth Lead Specialist Neurofibromatosis Nurse UK
Read More
COVID - 19 News from Children’s Tumour Foundation our partners in the US
Covid - 19 News from Children's Tumour Foundation our partners in the US
Read More