30 June 2020
This year so many children who should have been finishing their final year at school or taking their GCSE’s cannot celebrate with a leaving ceremony. The One Show @BBC has decided to put together a nationwide yearbook for all the students who should have graduated so they can celebrate their hard work. Jacob & Ella, who both have NF1, are part of that launch.
Jacob's story as told by Mum, Nicola
Jacob was diagnosed with NF1 shortly after birth as myself and his older brother Tom are affected. Naturally we were looking out for signs of NF1.
Jacob has bilateral optic gliomas, a hole in his heart and Dyspraxia associated with NF. He struggles with co-ordination and fine motor skills, which made it hard for him to ride a bike and tie his laces. He was also diagnosed with hypermobility of his joints and therefore found it hard to learn to write. We were told when he was about 6 that he would probably never be able to write legibly.
Part of him having NF1 includes struggling somewhat academically. Despite this, he was working extremely hard to get the best possible results in his exams. To help relieve the pressure on him, Jacob and some of his peers took English Literature a year early (last year) and he got a Grade 4. The lockdown has caused his school life to end quite suddenly.
Jacob was due to sit his GCSEs this year, as he was in year 11. Lockdown not only caused the cancellation of exams but also leavers assembly, prom shirt signing etc. which is a huge shame. Jacob was also due to receive the form tutor award to be presented to him at the leavers assembly. Now we don’t even know if they will send this to him. Leaving school in this manner has left him feeling deflated and a bit let down, as if all his hard work was for nothing and he is worried about the grades he will receive.
Like most other people this summer all our plans have been cancelled. As a massive supporter of Sunderland AFC, he is hugely disappointed about the cancellation of the Euros. As well as missing the end of the season and the chance of this team, however slim it was, to be promoted.
He has received a place to study travel and tourism at college in September, which he is really looking forward to.
Jacob has proved the medics wrong countless times.
His writing is great and due to his hard work Jacob is an accomplished swimmer. Because of his commitment and dedication, he now attends lifeguard training.
You can see Jacob on The One Show Below -
Ella, Nerve Tumours UK's blogger has finished year 11 at Tudor Grange Academy Worcester, like many thousands of children her age she will not be doing her GCSE exams.
Ella is saddened as she has worked hard and wanted to prove to herself and teachers that she would get the grades she needed to go to 6th Form college. As the lockdown turned everyone's live upside down, she is understandably nervous about her predicted grades.