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Ella’s editorial

03 January 2024

Ella's editorial

Hi everyone, Welcome to Ella's Editorial

I am Ella and I have NF1. I am writing this editorial, so young people with NF and those without it, will have a better understanding of the condition. In our teens and as young adults, life is hard anyway, as our bodies are changing and hormones affect our moods.  In addition, having an incurable and unpredictable condition makes it so much harder to deal with. I’m sure I’m not the only one to feel quite sad and depressed by it all.

By sharing not just the bad things but the good ones too, I might help those young people to feel they are not alone and stress that these issues are totally normal for any young person. 

Feel free to comment or ask questions on my posts.

January 2024

Hello everyone - Happy New Year to all of you, I hope you had a lovely Christmas. It has been a busy last couple of months which have taken a toll on me. This has caused me to become more fatigued.

Just before the beginning of December, my computer broke, it had all of my uni work and one of my assignments on (luckily I saved it into iCloud) which meant it had to be repaired. It has only just been fixed, or they have given me a new laptop. I’m not sure if it is a replacement laptop or the fixed laptop, as they have delivered it to my uni flat and I’m away at my parents at the time of writing this.

During the time my computer was being repaired, I had my accountancy exams which were really tough. I had two exams that week, the first one being Financial Management. If you want to know what Financial Management is, I will explain it to you: The purpose of Financial Management is to guide businesses or individuals on financial decisions that affect financial stability, both now and in the future. I struggled throughout the semester, as it was much harder going from year 1 to year 2, especially with this course but my lecturer was so kind and took his time with me and advised me on the best way of revising, which gives me hope that I passed.

The second exam on the other hand was tough and I mean really tough. As soon as I opened the exam paper, the questions weren’t as I had expected as it had 25 multiple choice questions and one 50 mark question which was to create a balance sheet (it is where companies show their assets, liabilities and equity of a specific time period) using the data given.

I enjoyed the Christmas break, as I did not have to focus on any university work. Instead I decided to go home to my parent’s house, I enjoyed doing what I wanted to do for a couple of weeks before university restarts in the new year.

Christmas dinner was lush.

Rhys was pleased with his Liverpool vintage shirt that his Danish Auntie bought him.

In the new year, I will be transferred to a new hospital, I now have to go to the NF Clinic at Guy's (on the advice of my geneticists). I am very nervous as I don’t know what this is all about and I need some advice - what is this clinic like?

I am wishing you all a Happy New Year.

October 2023

In September, I attended the 2023 edition of the NF Academy, organised by NF Patients Europe, and held in Lisbon, Portugal.

The Academy lasts for a week, and is an educational programme for young adults with NF. 19 young adults from all over Europe participated and received a diploma as NF Ambassadors.

During the week, NF experts talk about various issues such as mental health, patient advocacy, and rare disease management in Europe. Together with Portuguese partner Organisation Associação Portuguesa de Neurofibromatose, NF Patients Europe help the NF Ambassadors to work together on a better future for NF patients.

Days 1 - 3

After sleeping for most of the previous night I woke up in the Seminario Torre D'Agulla Casais. The breakfast was not the best, literally bread and fruit on repeat; so I went to the local supermarket's bakery to fill me up until lunchtime, Portuguese local food is quite amazing.

We then met up in one of the conference rooms, with the Office of Psychology in which we did team building activities. My favourite of Saturday’s activities was the introduction web. This is where we would hold a string and introduce ourselves and a fun fact and then pass it on to someone else while keeping some of the string.

On Saturday afternoon, we all took taxis to the beach where we watched the sun set and went in the sea for a paddle.

I preferred the Sunday activities because we seemed more relaxed with the Office of Psychology team. My favourite activity was creating boxes through origami. It was challenging but fun as we could decorate and put our thoughts and feelings in.

In the afternoon we went to the local outdoor swimming pool for a couple hours; it was freezing cold compared to the warm weather in Lisbon.

After this, we moved to the VIP Arts Hotel in central Lisbon which was amazing and really posh as it was a 4 star hotel.

I got to have my own room with a double bed and bath to use. However, I found it challenging to go in and out of the bath due to my hypermobility and I kept tripping over myself.

Day 4:

We had to leave early as we had to travel to the other side of the city to visit a Science University. The purpose of this trip was to go and visit university laboratories that are sometimes used for clinical trials for new drugs being developed. We learned about genetics and the scientific side of clinical trials.

During the break, we looked around the park which was very scenic and beautiful.

However I started to become ill due to the warm weather and had to go back with the Irish and the other UK contingency as they were coming down ill as well.

I recovered and later went to an Italian-Portuguese with the rest of NF Patients United. I had a pork flatbread, bruschetta and fries with a diet cola. The food was very tasty.

Day 5: 

We had to say goodbye to Melpo from Cyprus, as she had to go back home due to work scheduling issues.

We all gave her a group hug and individual hugs and wished her well. She told us we are all ‘her family’ and ‘we will always be there for each other no matter what’.

A few hours later, she messaged us on our Whatsapp group that she was back home safe and well. I hope to see her soon.

We then learned how clinical trials work and the different routes of administration for trial drug and these are:

1. Intravenous - this is where they will inject through the arm but there is a limited CNS delivery.

2. Intramural - injection in the shoulder, which is therapeutic and normally where topical medication is trialled at.

3. Intrathecal - injections in the back and is normally used for treating cutaneous neurofibromas.

After this, we then went for a Chinese meal, I'm not really a fan of Chinese but I gave it a go. I decided to have spring rolls and a pork Chow Mein and it tasted really nice and the restaurant looked over the views of the Lisbon coast.

We then went up the Gondola lift enjoying the Lisbon sunset which took us from the “25 de Abril Bridge” also known as the 25th April Bridge to the Oceanarium.

Day 6:

I went to a patient advocacy session run by Alexion, which was bought by the pharmaceutical company AstraZeneca in 2021. They told us that they listen to the stakeholders, who tell doctors and pharmaceutical companies what is in the best interest for each patient. They also told us about how clinical trials work and how long it takes for medication for genetic conditions to go to market.

We then went for a meal at a traditional Portuguese restaurant with APNF. I decided to try fried pork and clams, which surprised me as it was really tasty and I would eat it again.

I enjoyed this trip of a lifetime especially meeting people from different cultures and countries.

I felt more at home and I could talk to people about living within as they have been through very similar experiences as I have. I have learnt that there is treatment for NF being produced at the moment and looking at future generations, especially with genetic testing during pregnancies and before women decide to get pregnant.

I would like to go again next year, as I have made many friends and I wanna keep in touch and see them more as they’ve gone last year. I’ve done it again this year as they’ve become more of a family and they want to learn more.  Hopefully one day, more people from Nerve Tumours UK will be able to go to the NF Academy and learn the same, or very similar information as I have.

May update 17/5/2023

The Gaming Society 24hr Gameathon and elected as Treasurer

As some of you may have noticed on my mom’s Facebook page in February, I took part in the 24 Hour Fundraiser for Special Effects, a charity which The Level Up Gaming Society has been working with over the last decade and a half. This charity helps disabled people through the innovative use of technology by maximising fun and quality of life by helping people control video games to the best of their abilities, including partially sighted people learning how to  play video games. In previous years, the society has raised only £100 but thanks to the generosity of my family and the NF community we doubled our target to £200. It was quite tiring but at least we had takeaway pizzas (courtesy of my Mom) to keep us going.

Last week, I was elected Treasurer of the Level Up Gaming Society. This is a big achievement for me because just last year I was struggling with my mental health due to many changes in my life. I cannot wait for September because the President and I will be introducing new students to the Society at Freshers Fair.

Group Assignments

I was initially nervous when put into a group for one of my assignments as I had problems in the past when nobody listened to each other. In this case we all equally split the work up, which helped my mental health. Things got more stressful with a month to go before the assignment was due. It was hard when setting the tasks for each other as some of the members of the group did not turn up to the meetings. This was difficult because I and the others in the group did not know if the other people in the group understood the task that was given to them or if they completed it on time. This led to my mental health deteriorating and now getting help from my GP.

When we got feedback from the assignment, I found out we were deducted 10% of our marks due to one individual failing to referencing her work correctly which could have meant an academic offence mark. As a group we did warn her, even the lecturer told her the consequences. However, she decided to ignore all of us, which we were not happy about. This was very stressful and very angry at this individual because the lecturer told her several times that it could be an academic offence if she ignored us. I hope in the future I don't work with her as she has done this before.

New accommodation

I also cannot wait till September because I'm moving into brand new accommodation across the river from the University. Even though it is about £10 more expensive a week to live there it is much safer. I'm hopeful that my mental health will improve over the next year. The team at this new accommodation is already nice and they have found me a good size room which is adaptable for my disability so I don't have to climb upstairs or go up in the lift. It is hidden away at the back of the accommodation where I have views of the local park. It is also a small flat size for five to four people.

This means that I will not feel uncomfortable, when studying, wanting to go out, or cooking. The best thing about this is the kitchen, it is brand new which is a godsend because the kitchen we have at the moment in the old flat is falling apart. All the appliances are coming apart. For example, we have a broken freezer; broken fridge; broken door handles; covered shelves falling apart; a cooker that doesn't work with a hob that doesn't work - and all five of us have to use one hob and one cooker between us, which can be complicated if more than two people are cooking in there at one time.

Rhys Coming over

I received a surprise on my 19th Birthday. 

My older brother Rhys came down to Chelmsford. I haven't seen him since the summer of 2022. He bought me for my birthday a pair of Nike Air Force trainers, which I did not expect but I was really happy.

We went to Bills for breakfast and had pancakes with bacon and  Prezzo with Mom and Dad and had Pizza for lunch.

January update 3/1/2023

It has been a strange three months since leaving my parents house and moving to University halls in Chelmsford. It has taken a toll on my physical and mental health due to adapting to living with complete strangers that I haven’t met before.

To tackle my mental health, I joined one of the many societies Anglia Ruskin University has to offer. I decided to Join the Level Up Gaming Society or LUGS for short. This society is for anyone who loves playing board games and playing video games. These can be on their computers or video consoles. The society has a range of consoles such as an Xbox, PS4 and everyone’s favourite at the society the Nintendo Switch. It is a small society compared to the other societies, which is mainly for the students studying medical degrees.

When I moved into my student accommodation the accommodation team left my room a mess.

Mould in the bathroom, chewing gum everywhere, dirt on the carpet and the list goes on. After arguing for many weeks they gave me a £75 discount on the first term’s rent. Even though it cost my parents more money as they had to buy quite a lot of cleaning products. The kitchen on the other hand was another story, the shelves was falling apart and needed a TLC urgently because I had to keep putting the shelf back into the cupboard.

When I started my university course, I was very nervous because it was my first time away from home and without my family by my side. However, during the induction day, I met some other students who live at home but are doing similar degrees to me. They were very friendly and seemed nice. The lecturers during my first semester were very nice and would help us if we needed it.

Bargain hunting on a student budget - During the Christmas break, I received money from relatives and waited and waited for the Boxing Day sales.

They were a bit hit and miss. The hits were John Lewis; where I bought nail varnishes and a handbag; at WHSmiths I bought 8 books for £30 with a student discount, from the original price of £70. The final hit was M&S and I bought some body and face cream and a pink jacket. However, the big miss was Boots, their Soap and Glory gift sets for £5 which had items missing such as their face masks.

My hopes for 2023 are to finally pass my driving test, as this will help me become more independent. I hope to pass all my exams at university and not retake my first year. I would like to move accommodation in year two, as I hope there is nicer people than the people I live with at the moment. Also, I hope the accommodation is nicer than what I am staying in.

September update 13/9/2022

Hi, how was your summer?

Good News!!! I went to see Rhys and his girlfriend in Denmark for 6 days. I felt nervous about going to Denmark after Covid because I was still worrying about catching it. In addition to this we had to fly from a different airport because our usual airport stopped direct flights to and from Denmark. However, on the plus side the flight from London Heathrow to Copenhagen was much faster, which meant we could spend more time visiting different parts of Copenhagen.

On Monday, Rhys decided to take me to a city in Sweden called Helsingborg which is centred around the west coast of Sweden.

It is a half an hour ferry ride for Helsingør which is about 10 minutes from where he lives at the moment.

I am normally sea sick on ferries but this time I wasn’t, which is very lucky.

We then went for a coffee and a look around the shops and I was shocked with the price conversion of gifts. I bought a Rituals gift set for 250 SEK and in GBP is around £20. However, alcohol is much more expensive in Sweden due to the tax system there.

On the return ferry ride we looked around Kronborg Slot (Castle), where the setting of Shakespeare’s Hamlet is set. 

Mom and I could only go to some parts of the castle due to restoration work taking place. 

However, the bits we went to were very nice and looked in keeping with the local area.

On Wednesday, Rhys, Emma (his girlfriend) and Marlene (Emma’s mom) took Mom and I to Marlene’s old Summer house in Enø, which is like Devon or Cornwall. It was very busy there because it was the Danish summer holiday for all students and family.

Also on this day, we went to Camp Adventure, which is an Outdoor climbing park in Rønnede, Denmark.

We decided to go up the tallest tower in Denmark called The Forest Tower: this is 45m high and looks out over the South Zealand landscape.

The experience starts already at the old watermill, when you first step on the 3,2 kilometres long raised footpath, which meanders through the forest, around the trees and over the streams, until the Forest Tower suddenly appears between the trees.

More information is at

My review of the Forest Tower is that: It is set back over a large forest which the tower is in keeping with the area. Once you get to the top, you can see all of South Zealand. On a clear day you can see the capital, Copenhagen. Marlene and Emma decided to go flower picking instead and for 50 DKK (around £7) you can fill a bucket with as many flowers as you can fit.

I was in pain afterwards but luckily I took my time. It normally takes 45 minutes to go up and down, but we spent a lot longer.

On the 18th of August, I received my A-Level results and I was pleased with all of them. Luckily I accepted my Unconditional offer to study Accounting and Finance at Anglia Ruskin University. 

Next, we went for breakfast to celebrate. It is a restaurant within a farm.

Now for the past few days I have been packing ready to move into uni accommodation.

I gave my omelette maker a test run and would fully recommend it

although it takes longer to produce an omelette than the manufacturer would say it.

I have been proactive as I bought a TV licence for uni and the uni’s gym membership as it is quite reasonable. I am pleased that they do body balance, which is not too stressful on the body and helps the core muscles.

I am going to be honest and state that I am really nervous, but excited about this new adventure. I hope that I will make friends.

Wishing everyone going back to school, college or going to university the best of luck and remember - you’re as good as anybody else.

May update 17/5/2022

Hello everyone, how’s life going for you over the last two months? For me, it has been up and down, especially with my last mock exams and me turning 18.

Firstly, I took my last set of mock exams, which I found challenging, especially Computer Science. This is because the paper was created by the computer science teacher and it didn’t replicate an OCR paper. However, I passed Drama and Sociology, in which Sociology I reached my target grade which was a C. I am hoping for the real exams starting on the 23rd of May to try and aim for a grade B - my dad’s birthday is on that day, maybe that's a good omen .

I turned 18! This means I'm no longer a child and now into adulthood. 

The first thing I did when I was 18 was drinking a Bucks Fizz, as it was an exam day. The presents I received were an Iphone 11, an Apple watch, some make up, a tv ready for university, which I am using at the moment while I’m in bed.

My neighbours Oli and Joanne joined me for lunch at our local pub to celebrate my 18th. Joanne sings in a gospel choir and got everyone in the pub to sing 'Happy Birthday'. I was embarrassed, but felt loved.

Over the Easter holidays I decided to make chocolate fudge cake and chocolate brownies for my next door neighbours. The chocolate fudge cake was the hardest because I had to cut the cake horizontally and with my poor grip it looked more lopsided, while the brownies did not!

I decided for the decorations to add mini chocolate bunnies, chicks  Galaxy Enchanted Eggs. This is because I wanted to add a bit of colour to the cake instead of the cake looking dull and boring to look at and eat.

I decided to apply for the Disabled Students Allowance.

This is a Government grant, which is available to students in Higher Education who are disabled, or have dyslexia or other medical conditions such as dyspraxia. The Government could give students starting higher education, up to £26,000 a year starting from the 2022 to 2023 academic year.

As I have quite a few medical conditions, I decided to apply for it, as this grant will help me with my studies at university.

I thought the assessment part of DSA was like the PIP assessments, where the assessors would catch me out. However, this wasn’t the case, as the assessor asked me how my disabilities affected me and what equipment I needed for me to study at university. I will find out how much money I will be getting off DSA in the next 6 weeks or so.

Nerve Tumours UK can support students. Take a look at our iNForm programme.

If you have any questions on your next steps after you finish school ie if you need general advice, financial or other available support, please contact

Good news: I'm finally going to see my brother in Denmark. It's been 2 years since we've been together because of Covid.

"As I finish off, I'd like to wish everyone one a successful NF Awareness month. If you're fundraising or just raising awareness, remember you are valued and as important as any other member of society.  Let's hope NF gets really 'heard' this year."

– Ella

February update 10/2/2022

Hello everyone, how was your first month of 2022? It has been a bit busy - from preparing for my drama exam, which is coming up later on in February, to getting offers for universities.

Firstly, I would like to talk about getting offers from universities. I got a conditional offer at Swansea University, which is where I still need to meet the requirements of the course to get a place there, usually through my exam results. This university is my aspiration because it is ranked 29th overall in the league tables of universities in the UK.

My next offer was from ARU (Anglia Ruskin University), in which I got an unconditional offer. This is where I received a place, regardless of my grades, although there might still be a few things to arrange.

I was shocked at first because they liked my love of maths, me taking part in DofE (Duke Of Edinburgh) back in year 9 and me doing charity work at Nerve Tumours UK.

Later this month, I am visiting ARU in Chelmsford for an applicant day. This is where you experience half a day as a university student and meeting your lecturers. I am very excited because I thought I would have to defer for a year because of my grades at college.

Last week, I was walking to drama and I fell down 5 stairs and I dislocated my right knee cap and ankle. No teachers or TA asked me how I was! Luckily I was allowed to do school work at home for 2 days to recover from the injury.

The GP’s tried to transfer me to Oxford for my foot surgery, but for some reason I don’t meet their criteria! So more battles to face.

I’ve got a Drama exam coming up, in which I'm doing a scripted piece about a mother and baby home called ‘Be My Baby’ by Amanda Whittington.

The teacher gave me the role of Matron as she has no emotions and is quite ‘wooden’. She said I would be perfect for the role!!

I’ve got an Ophthalmology appointment this month and I hope they will discharge me, as I've been going there since I was 8 and diagnosed with Neurofibromatosis.

A few of my Dad’s work colleagues have now been getting Covid - my Dad still hasn’t caught it yet!

We might be having a Year 13 prom, Covid permitting. I bagged myself a ‘Bardot’ cocktail dress in the sales. I’m not good in high heels, so I have no idea what I am going to wear on my feet; might be trainers!!

January update 6/1/2022

Happy 2022 everyone

Our Christmas was very quiet, just the three of us. That said, we ate enough food as if there were six of us!

My favourite Christmas food was the sausage roll garland, it was shaped like a wreath and tasted like the best sausage roll ever. This wasn’t any sausage roll, it was an M&S sausage roll!

I really enjoyed drinking Bucks Fizz, as it wasn’t very alcoholic. We were rebels as we had beef instead of turkey!

My best Christmas presents were a pair of trainers and a reversible coat from my Gran, you can have it faux suede or faux fur. I have enough lotions and potions to last me until next Christmas. My neighbours bought me a Yoga mat for Christmas, which was very nice considering they don’t know me that well.

My brother took the opportunity to spend Christmas with his friends in Malaga. Most of the days he was there it was around 20 degrees and even got a bit of a tan. His girlfriend Emma was ecstatic when she found a Primark there, as there aren’t any in Denmark; where she lives.

After Christmas, I went to the opticians and my specialist myopia lenses are still doing the job. However, it was the right time to have a new pair of spectacles as my old ones are 5 years old. Mom also had to have a new pair and Dad nearly had a coronary when he saw the bill!

On New Year's Eve, we went to Pizza Express, to avoid the crowds on New Year's Eve. I had a Calzone, Mom had a pizza with a fried egg on top and Dad had a plain American one.

I had to go to another hospital appointment for ophthalmology, it was a field vision test again… with the eye patch! Just the week before DVLA after 7 months sent me for a field test for my provisional licence.

So back to sixth form tomorrow, I’m dreading it because they are still not following the EHCP and it is impacting on my A Level grades. Mom calls it ‘gas-lighting’.

Something to cheer you up, I found a photo of me on my birthday at special school. I got to wear the ‘birthday hat’, but look at the size of the knife they gave me to cut the cake! Considering I have poor fine motor skills it could have ended very badly.

Wishing you all a better 2022!

December update 6/12/2021

Merry Christmas everyone,  hope you are all keeping well with the new variant circulating.

I have not long completed my mocks, it didn't go well with Computer Science.  I think I did ok in Sociology though.

Managed to finish my Christmas shopping and I treated myself to a 3ft Christmas tree for my bedroom. Dad got me an advent calendar, I'm not too old am I?

In November I visited South Wales University again, but looked at their other campus in Treforest.

Apparently Tom Jones came from there, it was a mining village.

It was good to see where I'd be actually studying and the accommodation.

I treated Dad to a cuppa and a Welsh Cake for taking me.

My school is collecting food cans for the Salvation Army. Last year, 6th form was appalling, with only a few items. Looks like this year will be the same.

Had a physiotherapy appointment over the telephone! That's a first. He seemed like a really nice chap, I lack motivation to do the exercises though.

Managed to do a bit of baking and shared the cakes with our new neighbours...think I over did the yellow food colouring!

My family and I had a trip out to Kidlington for our booster jabs. It ran very well and the Pharmacist was brilliant.

At our local shopping centre we have a German sausage stall.

We decided to try, and we're hooked, the spicy cheese and pork is lush.

Hope you all have a lovely Christmas and a Happy New Year!

Autumn update - 15/10/2021

Hi everyone, how’s your September and October been for you? For me, I was able to go and look at universities in person, instead of virtually.

First, I looked at Anglia Ruskin University, at the Cambridge Campus. I thought the campus looked very modern. However, some parts of the university dated back to the 1880s. What I didn’t know, was that it was originally the Cambridge School of Art founded by John Ruskin. When I was on the tour, they said that Pink Floyd performed there when they were less well known, there was a Blue Plaque to commemorate this.

I didn’t like the accommodation because as you walk in, the room was very basic and the bed was tiny. There was hardly any room to store clothes and the ensuite was dark and cramped. Additionally, the room was in the basement with a small window. The university didn’t show themselves in a good light with the accommodation - wouldn’t you want to show your best room to entice people?

The second university I looked at was Oxford Brookes University, Headington Campus. This campus had only just been renovated and it is very spacious and airy. It is home to the Oxford Brookes Business School, which is the area I want to study in. I’m very interested in doing Accounting and Finance and the course in the first two years is very structured in content. In the final year, you can do a synopsis or a dissertation.

The facilities were very modern and open plan. There are five different canteens serving a wide range of food. It is only about 35 minutes away from where I live, but I have decided I would like to live on campus, instead of at home. Additionally, there are shops and other cafes on site, which is good for me as I can’t walk far.

My brother's girlfriend Emma is doing a cookie sale to raise funds for those with NF in Denmark. She saw fundraising in the UK for NF and decided to do the same in her home country. She hopes that it will raise awareness over there and at the sale, a man came forward to say his child aged 9 has NF. It really is a small world, isn’t it?

I'm also finding 6th Form difficult at present, I do feel they don't understand my needs or problems. I want to do well, but I do need longer to process work and they just don't seem to get that.

On a positive note. I have just started Tai Chi at a local community centre, which I’m really enjoying. A man called Mats (pronounced Maz) from Sweden is my instructor and he is super friendly. Hopefully it will help me destress and improve my core muscles. After doing it I felt more relaxed, tired and ready for bed.

Summer Holidays - 16/09/2021

Hi everyone, how was your six week summer holiday? I very much enjoyed my holiday because I explored my new local area and I found two parks only a 15 minute walk away from my house.  One of the parks is on a steep incline, it’s a relief when you reach the top and venture down.  However, the views are terrific because it shows the panoramic view of Banbury and the surrounding villages.

I went to an Indian restaurant just outside of a village called Wroxton. The restaurant was called the Indian Queen. It was a nice restaurant because they didn’t want to hassle you to leave. We had poppadoms and vegetable samosas to start, they were lush. I ordered a chicken tikka biryani, Mom had chicken tikka masala and Dad......well he had fish and chips, The server thought that my Dad should try a curry. He said “There’s a curry for everyone” and he persuaded him to try a half portion of a chicken curry. What do you know, he loved it!

The house is feeling more like home, as Dad has been working hard building flat-pack furniture. Dad has set up a dining table, coffee table, a desk and a TV unit and my bedroom furniture.

We all had a go at clearing the garden, it’s full of rocks and masonry. Dad said I helped by leaning on a rake! I’d like to say I did help a bit, but really felt it on my back the next day.

The big news in Banbury is the opening of Lidl. We went for a nose-around and think the whole of Banbury had the same idea. Where else can you buy fresh pizza slices and a cordless drill in its own carry case?  I have never been inside a Lidl before and I enjoyed the bakery there.

At the end of August, I attended Summer School at the University of South Wales.  I was a bit nervous, I will admit. It gave me an idea of what university life is like, I hope I’ll keep being brave enough to chat to people.

Moving House & Mock Exams - 20/07/2021

Hello everyone, how is ‘opening up’ going for you. In this editorial I will be talking about the stresses of moving house to another part of the country and my mock exams.

Firstly, at the end of June, I moved house to the outskirts of Banbury, near a village called Drayton. Moving day was quite stressful and nerve-racking for my mental health because I had to get up early, pack the rest of my belongings up into boxes and await a phone call confirming that we can move into our new home.

When we arrived at the house, I realised how much bigger it is than our previous house. There was no flooring or carpet, just concrete. We did not have beds for a week, so my parents had to sleep on the floor.  I was lucky as I could sleep on my old bed including a specific scoliosis support mattress.

On the first night, we ordered a pizza express meal as we were too tired to cook. The only positive about moving house at this stage is that it only takes about twelve minutes to get to college, so there are no excuses for being late.

Well, my mock exams didn’t go to plan however, it wasn’t anything I did wrong. As part of my OFQUAL report at my last school, I was allowed extra time, enlarged font, rest breaks and a computer for my exams. Instead, the school did not provide any of these. My parents complained saying it’s a legal requirement. In the end, I was only allowed to retake one exam.

There has been a COVID-19 outbreak at my school, most of year 9’s are self-isolating and not many people are taking the lateral flow tests. Has this happened at your school?

I’m really angry with Child and Adolescent Mental Health Services (CAMHS) as I haven’t had an appointment in over two months when I’m supposed to have it every fortnight.

I’m currently writing this on my new laptop, which I have saved up for over the last two years. Saving over such a long time made me appreciate its value.

Learning to Drive - 09/06/2021

Hi everyone, how was your half-term holiday and bank holiday Monday. It seems that we have more restrictions being eased over the last couple of weeks.

Last Saturday I received my new motability car. We went for a Nissan Juke with speakers in the headrest. The chairs are really comfy than the last car. However, the only downside is that my mum can't drive automatic cars very well as she drove a manual for years.

It has been a tough week because my uncle on my mum's side was rushed into hospital at the end of May. He later had brain surgery and it made me worry a lot about if he will get better at all.

On the 7th of June, I talked to disability support at a uni that I hope to go to next year. I didn’t know there would be quite a lot of support for people who have additional needs. I feel more confident about going to university next year as they will help me make friends and support me through my degree.

World NF Day - 13/05/2021

Hi everyone, Easter has come and gone, and we’ve just come out of another restriction caused by covid-19. In this part of my blog, I will be talking about going back to school after a long Easter break and going to the opticians.

During the Easter holidays, I went to Keith Holland Opticians in Cheltenham, where I get my twice a year check up on my specialist contact lenses. The team at Keith Holland Opticians are very kind and friendly, and they offer appropriate advice if your eyesight is getting worse. When I went, I was very happy that my eyesight had stayed the same since my last visit, which was at the end of last year.

Two weeks ago, I returned to school after the Easter break, and I have now started the year 13 content for sociology. I found it quite hard initially as I have to learn everything, I knew in the year 12 content in more detail. However, I understand it more now because I have asked more questions and answered the teacher's questions. Additionally, in computer science, I am finally telling my teacher what I’m struggling with.

This month is NF awareness month, where we try to shine a light on NF. My mum and I have contacted people in Scandinavia, Denmark and Norway and they are trying to light up buildings across Scandinavia. Hopefully, we can shine a light all over the world. 

Second Birthday in Lockdown - 04/04/2021

Hello everyone, it’s been a year since this lockdown has started. We have lost many people in the UK to Covid-19 including some of our own community. However, we are nearly there and we are almost out of this lockdown. In this monthly blog, I will be talking about college and my 17th birthday!

Two weeks ago I turned 17, my second lockdown birthday. It was a more enjoyable birthday than last year as I got to spend it in college, rather than spend it stuck at home. For my birthday I got hair products, some Nintendo switch games and Amazon vouchers to spend on books.

In the evening I also had a rainbow cake.

The other week, my dad went through the garage and found some old photos of me and my family. Some of the photos I didn’t know existed. One photo is of me and my brother and the other is a pregnancy photo of my brother.

Happy Easter to everyone. I hope everyone had Easter eggs and had a relaxful holiday.

Lockdown Chocolate Addiction & The Roadmap to Normality 08/03/2021

Hi everyone, we are nearly out of this never-ending lockdown. We have only got till the middle of June and we will hopefully have no more lockdowns if everything goes to plan following the recent government announcement. In this editorial, I will be talking about having the Covid-19 vaccine and coming out of lockdown.

On Monday, I was watching the press briefing on tv and I was very pleased to learn that I will be going back to college on the 8th of March. However, I’m very nervous about taking the lateral flow tests as I have never done a Covid-19 test before. I also think that the slow reopening of businesses is okay because we need to vaccinate the top 9 priority groups with their first dose before we can start to open up. What do you think about the slow reopening from the countries third lockdown?

Last Wednesday my mom and I were called up for our covid-19 vaccine. We both had the Pfizer vaccine. The following day both my Mum and I woke up with a sore arm, my mum also had a headache. If you haven’t had the vaccine yet and you are a part of the over 60s/ or 16-64 with an underlying condition group, you should contact your GP as you may slip under the radar.

I wanted to say thank you to all the staff of Corbett Medical Practice, who was doing the vaccine the day I had mine.

They made sure that my mom and I were okay after having the vaccine. They did this by giving us a 15-minute timer to check if we had any symptoms or reactions to the vaccine, which we didn’t.

My Mum and I have been a little bit piggy the last couple of months because when my dad goes food shopping he has been buying chocolate and easter eggs and he can’t stop buying them.

Lockdown 3 Life Goes On 10/02/2021

Hi everyone, how’s lockdown 3 going for you all?

Over the last few months, we’ve all been home schooling & I have also started baking.

Home learning in lockdown 3 has been very hard for my mental health, as I feel that I cannot cope with the pressures of doing A Levels.

I would like to do more work as I'm getting bored being stuck in the house and I can only go out for one hour a day. However, looking on the positive side I am enjoying my A level subjects.

In Sociology I have been learning about internal and external factors of ethnicity. Additionally, in my other sociology lessons I have been learning about family diversity. I prefer learning about ethnicity because it is interesting to learn about the ethnocentric curriculum and the different factors that affect achievements in exams.

In Computing, at the moment I am doing Javascript and PHP, which stands for PHP Hypertext Preprocessor. I'm enjoying learning about new programming languages and creating my own programs.

Last Friday my school cancelled all lessons because it was National mental health week. Instead, they set optional tasks for the school to do.

I recently did an escape room task. For this we we’re virtually locked in a room and given clues to solve riddles so we could get out. I found it very hard and I'm still working on it. My brother went to an escape room in Copenhagen with his work colleagues and the theme was Covid19! He had to find the vaccine. Would you try it if you could?

During this lockdown I have been baking an oat loaf bread for my mom, who is dieting. My mom loved it and we've been baking some more as it is low fat.

If you want to make some here is the recipe:

Will you try and bake this?

A Strange Christmas & Lockdown 3 - 08/01/2021

Hi everyone, I hope you’ve had a safe Christmas and New Year. My Christmas and New Year was very quiet as I couldn’t see my brother due to the Covid restrictions over December and January. Unfortunately, my brother had no option but to stay in Denmark over Christmas. He lives not too far from Kronborg Castle, which was the setting for Shakespeare’s Hamlet. Apart from that, Christmas was very quiet and calm. It mainly involved eating a lot. I got a Nintendo switch, makeup, books, money and a kindle for Christmas. We went with an untraditional Christmas meal of sirloin beef this year.

In December I had my MRI scan for my head. During the scan, the nurse asked me if I would like to watch a film because a young patient raised £21,000 for a special tv in the MRI room. I decided to watch Harry Potter and the Prisoner of Azkaban. Just six days later my MRI results came back. I have found out that one of my tumours has shrunk by 1.7mm in total. I was very shocked when I found out and I had to ask the Doctor again because I couldn’t believe it!

We should all be a bit more prepared now. Back to pyjamas aka loungewear. I've definitely got more to do as I've started my A levels. My current school is more supportive and really embraces online learning. Today I did Sociology, and you could hear a vacuum cleaner in someone's house. I'm setting myself up in my brother's old room, that way they can't hear our washing machine going and Mum singing. 

I hope you have a Happy New Year!

Relative Normality in Lockdown 2 - 07/12/2020

Lockdown hasn't changed for my family because we only go out for education, work or shopping for essential goods. In this part of my blog, I will be writing about going to college during a month-long lockdown.  

Going to college during a lockdown

In Computer Science at the moment, I am doing binary and binary application using python. At the beginning of the binary topic, I found computer science very hard as it was a new subject to me. However, I have worked hard and asked questions during the lesson. Now I'm hitting a grade D after only doing the subject for a couple of months. At the end of this month, I’m doing another test, but this time I will be doing it on everything I learned about binary.

In Sociology, I am doing Family and Households with one of my teachers. With the other Sociology teacher, I am doing Education and Research Methods. Out of the topics I'm doing in Sociology, I enjoy the Education topic more than the Family topic. This is because of the different methods each sociologist uses and their views on education and the education policies each government comes up with. I’m finding it hard with the essay writing because I've never been taught how to write or plan an essay properly before. However, my teachers say that they will help me with the essay planning and writing it.

I’ve only just started the Drama course at Sixth Form as the first two months we recapped every practitioner we knew at GCSE level and learned new practitioners for A level e.g. I have just learned Commedia dell'Arte which is a comedy of the arts. Commedia dell’Arte has four stock characters in which the Harlequin inspires the modern-day panto characters. I'm also just starting component one, which is interpreting a chosen text. It can be from pre-1956 or post-1956. I think that Pre 1956 plays are going to be hard to reinterpret because it could be hard to change the text to fit a modern-day perspective.

November 2020

** Stop Press **

Since I last wrote, quite a lot has happened with the government and covid. From Thursday everyone must stay home unless you are a key worker or you are still in education. This will continue up to the 2nd December or until COVID-19 cases come down.

Meanwhile, at my school, you now have to have daily temperature checks to see if you may have symptoms of covid. Additionally, anyone self-isolating can join in with lessons via Teams. My new school seems more organised than my previous one. This week I'm spending my weekend inside. Wait, everyone is staying inside...


Hi everyone, how was Autumn going for you?

In my opinion, I don’t agree with the new three-tier system in England and the five-tier system in Scotland, because it is very confusing and it won’t stop some people from flouting the rules. At the moment I’m finding it very hard with the new rules as only one person from your household can go into a shop at any one time, I think that the country should have done a two-week circuit breaker, like what Wales and Northern Ireland are doing during the half-term holidays.

A couple of weeks ago I had to go to my GP surgery to have my annual flu vaccine. I had the nasal spray instead of the injection as I’m still under the age of 18. The funniest thing about the injection was that some of the spray went up my nose and came straight out and dripped into my mouth. Has anyone had that before?

This month was my brother, Rhys' birthday. Rhys will be 22 at the end of the month. However, Dad thought Rhys was born in 1997. He disagreed with Mom, but she said, "I should know I was there".

After half term I will have to wear a face mask in the sixth form common areas because of the new rules and regulations with COVID-19. However, on the brighter side, my Computer Science teacher said all the students isolating at home had 'XH' next to their name on the register. He joked "Maybe it stands for Exiled at Home!"

September 2020

It has been a while since I last wrote to you in my editorial. Over the recent months I reflected on the current crisis and how this has affected mine and my families' life in my Crisis report "Ella’s Blog: The Flu Jab". Now that we are back to some form of normality follow me here again. 

Hi everyone, how was September for you? Seems that another national lockdown could happen at the end of October is inevitable. I just started a new school in Bloxham.

On my first day of starting 6th form I felt really nervous and that I was going to be sick because I didn’t know anyone there. However, when I arrived at my new 6th form, I was greeted by the head of year who was very friendly to me and soon introduced me to my new tutor for the year. The tutor understood that I had to travel an hour and a half every day because he doesn’t live near the school. Later on, in the day I thought I was going to get lost because the school is really big and there are at least five different blocks that I have to go in on any day of the week. The school has a working farm and it is the largest working farm in the UK. There was also an indoor swimming pool and three different buildings dedicated to PE.

Before I started 6th form, I had to change A level subjects because the subjects all clashed with each other. I am now doing Drama, Computer Science and Sociology. I thought that I would hate Sociology because I thought it would never enter my mind to do it and it seemed to be really complicated subject. However, I now really enjoy it and I am thinking of doing social sciences at university. So maybe it is fate.

On my second day of 6th form I had to have my school photo taken.

I really don’t like my school photo being taken because the photo ends up looking cheesy. Does anyone agree that your school photos ended out being cheesy or embarrassing? However, when I received the proof copy of my school photo, I was very surprised with it because the photo didn’t look cheesy at all.

The funniest thing about sixth form is that there is a student named Dom, who is the exact double of my brother Rhys. I showed a picture of my brother to Dom and he agreed it looked exactly like him.

At the moment, I’m finding it really hard to make friends because I don’t have the confidence to talk to them.

December/November 2019

Hi everyone,

How is everything going with your education and hospital visits?

I found out that I do not need to wear a back brace anymore, which I am really pleased about. However, my back is in so much pain. My doctor said it is normal during the first few months of not wearing a back brace, because your body must get used to not wearing one again. Your muscles become lazy and weak; they rely on the back brace. Have you had any good news from the hospital or at school?

During mid November I sat my very first set of mocks, which are supposed to be like an actual GCSE exam. I found them stressful. The exams I felt the most stressed with were English and the combined science exam. However, I found that Drama and Spanish were the easiest.

The one thing I was angry about with the mocks is that my Spanish speaking exam keeps being rearranged and my mock results come the last week of the term before Christmas. 

Hopefully I have done well because I revised so much.

The one positive news I have got from school is that they have now allowed me to have rest breaks again, after they had stopped them in early September.  They deemed me too old to have them and needed to concentrate on my studies. School getting rid of my rest breaks made me feel more fatigued each day, from when I wake up till I go to bed. I am now using my rest breaks two or three times a day, if I'm tired because of my NF or if I feel stressed out for other reasons.

For Christmas I’m going to stay at home and celebrate with my parents. However, I wish my brother was staying over with us. He decided to stay in Copenhagen with his girlfriend Emma, because he is coming back home in January for six months to do his internship with the company my dad works for.

I just want to wish you all a very Merry Christmas and a happy 2020, let’s hope it’s a good year for improving awareness and the treatment of Neurofibromatosis!

"I just want to wish you all a very Merry Christmas and a happy 2020, let’s hope it’s a good year for improving awareness and the treatment of Neurofibromatosis! "

– Ella

October Half Term

On Saturday I went to Milton Keynes for our four times a year trip to buy clothes I enjoyed it as I looked for Christmas presents for my Mom, Dad and brother Rhys. Not sure why, but I always get stressed when shopping and had another of my ‘meltdowns.’ I was lucky as Mom and Dad were going to just drive home if I didn’t get myself together.

They were quite insistent that I get a nice casual outfit, pushing me to buy a Slytherin jumper (it will make sense later on). We had a break and had tea and scones, my Mom said I’m the reason she’s fat as she eats when I stress her as she doesn't smoke or drink.

We bought some Halloween sweets and a puzzle for Jack who lives on our road, he has autism and we got chatting with him at our doctors. My parents said it’s good to chat to him and his Mum as people sometimes don’t know what to say and go out of their way to avoid people who are different. He seemed really pleased and he remembered my Mom.

On Tuesday Mom and Dad told me I’d been granted a wish by a charity called Ray of Sunshine! We were travelling down to Guilford to see a film being made, as I love everything to do with drama.

We stayed at The Mandolay Hotel and it was a lovely room and we had tea and shortbread as soon as we arrived. After we settled in, we went for s walk and looked around Guilford town, we got to look at Banbury Castle and the grounds. The charity paid for my outfit and for us to have a meal, so I chose TGI Fridays. I LOVE ribs so had nachos followed by BBQ ribs, it was lush.

When we got back to the hotel, we got to meet Karen Cockburn and her husband from Nerve Tumours UK, I was nervous, but she was super friendly and a real giggle. I got to talk about school and how I was frightened about meeting the actors on the film set. Karen said they are just human and the same as us, so just be me.

The next morning, we were picked up and chauffeur driven to Shackleford and I learned I would see Ralph Fiennes (so that’s why they pushed me to have a Slytherin jumper) and Cary Mulligan. We met our guides Lily and Leah who took us around the set, props, make-up and costume departments.

Then I was allowed to go in Cary Mulligan’s trailer and chatted with her for nearly an hour, she was so friendly and interesting (she was laid back wearing her furry purple slippers). Before went for lunch we rang my brother Rhys and got Cary to wish him a happy 21st birthday, for once Rhys was stuck for words.

Ella with Carey Mulligan

After lunch we went to a period house they were using to film in and around, there were people waiting at the gates to try and see the actors. Our windows were blacked out and they waved at us, as they thought we might be famous! I got to watch Ralph Fiennes acting and chatted with his acting double. He was a real laugh and said he has acted in ‘Pirates of the Caribbean’ and about to act with Ralph Fiennes in the sequel to ‘Kingsman'. I'd love to see that film set!

The lady who owned the house was so sweet she was elderly, and her husband still works, and he is 80! She took me around her house and showed me how they had changed the rooms to fit in with the film. She said she use to have 26 gardeners!

Therese is a lady who rents the lodge in the grounds, they were using her house too. She was quite bossy, but this was good as she grabbed the director Simon Stone and told him it was my special day and that he needed to meet me. He said this was his biggest film yet, it’s called ‘The Dig’ but I’m not allowed to tell you anything else.

Therese said I could see her rescue pony; she was lovely and wanted lots of fuss. Therese was so kind to me, she said I must be similar height to her granddaughter who she hasn’t seen in some years. She gave me a big hug when we were leaving.

Mid October

Hello everyone,

Just wondered how those doing mock exams are coping, do you feel stressed or pressured to do well?

Those who sat GCSEs at my school last year got the worse results in 5 years, so the Principal is saying he wants 2020 to be ‘our year’. Obviously, our results reflect on the school, but I think if we don’t get good grades some of it is their fault. For instance, I’ve had 5 different teachers for Spanish in 5 years, each one teaches differently and now we are behind on the syllabus.

School are offering revision for different subjects for an hour after school, I feel I must go even when I feel tired. Not sure why, but I don't feel I can say no to teachers, I think I worry what they will think if I don’t turn up. Do any of you feel like this sometimes?

I’ve got upset this week as my tutor Miss Capewell is leaving after Christmas.  I’ve had her since year 7 and she’s been really supportive to me, she wears her NF1 badge on her lanyard. I wish she could have stayed till I finished year 11, I hate change as it seems to affect everything I do.

I’ve been having some sessions with a therapist from CAMHS (Tim) he’s from the Black country and sounds a bit like my Mom and Dad who are from Birmingham. So far, he’s agreeing to see me at school, which is better as I worry about losing time from school. He’s giving me techniques to de-stress and stop me getting angry. It’s a pity school don’t show students in year 11 how to avoid stress, instead it’s all about meeting grades.

I hope anyone out there doing their GCSEs are coping and not letting it get on top of them.


Hello everyone,

I’d like to talk about how stress and anger impacts on me and my day to day life. My stress and anger can start from the moment I get up, certain trigger points can start it. Some days it’s just my Mom saying, “hurry up are you ready for school?” or even if they've made me breakfast without asking what I want. I know my behaviour is silly, but I don’t know why I get angry

As a person I don’t like change, it screws with my mind and I find it hard to adapt to new things or places e.g. new school clubs, hospitals or visiting family.

Most people like surprises, but not me because I get stressed about what it’s going to be, do I have to go somewhere or will I enjoy it. In reality it normally pans out ok, but not before I’ve become unravelled.

I get frustrated when friends switch off when I’m talking and then go on about what they’re doing at the weekend. They never include me or invite me. It makes me feel unwanted.

I think teachers don’t really understand me, I work really hard to keep up with lessons and because I do, they think everything is fine. I worry about maintaining grades, but I feel embarrassed to admit this to them.  A lot of times I go over the work again at home and then still must do my homework. Most days I’m shattered but find it hard to sleep and wind down. So, I end up stopping on my tablet till late, then I don't want to get up in the morning. It’s a vicious circle. Does anyone relate to this?

24th September

I felt excited about going back to school because I get to see my friends again after six weeks on holiday. I am excited as I might get new teachers and new people in my classes.

I enjoyed today as I got to meet my new teachers and some of my classes were swapped around, but I am nervous about passing my GCSEs  as I really want to do decent A level subjects and go to a better performing Sixth Form.

The downside is there is a year 11 tie, you can have the option of wearing the normal school tie which are clip on or a tie up year 11 varity. The year 11 tie you have to tie it up and I can’t wear this type as I feel like it is strangling me.  So I have decided to wear  my usual clip on tie which is optional.

However, the achievement team are offering to take my tie and remove the clip off it and put it on the year 11 tie, but they said if it does not work I have not got another clip on tie and they keep pestering me about it. It makes me upset because I’m there to do my work not to be pestered. I can understand that they are trying to help me, but it is messing around with mental health.

My timetable changed again as the achievement team wants to take me out of an hour a fortnight in Spanish and half an hour geography without telling me why or what for. They also don’t want me to have rest breaks when I am fatigued in lessons in case I miss vital work. So how come this is ok but my health isn’t?   

16th September 2019

On Wednesday I went to hydrotherapy for the first time. It was super hot in there, but the water was very relaxing. The physiotherapist was lovely, she use to do my splints when I was little. She made me put a foam noodle between my legs and I had to raise my legs like I was cycling. She made me swim on my back and do ‘Spiderman’, which was using your hands and feet to crawl along the perimeter of the pool.

On Friday I met Tim my CAMHS counsellor, I didn't find it helpful as I felt he wasn’t really listening to me.

Saturday I went to the Cotswolds with my Dad, we stopped at an Aldi and did a big shop. Dad had a ‘Brexit cupboard', he’s saving canned and none perishable ready for 31st October he wants to be prepared.

In the afternoon we went to Banbury and sent some Percy Pigs to my brother's friends in Copenhagen, as they have a sugar tax and sweets are very very expensive in Denmark. Dad treated me to some lipstick,  I’m still rubbish at applying it.

Sunday Dad took me out for a drive to Cheltenham and bought some bits and pieces. Not a traditional lunch at all as we had homemade beef burgers. Had to help pack stuff away as we’re having builders in to repair the damage from my leaking wet room.

Rhys’ girlfriend made him a face pack to make him beautiful,  I don’t think it worked.

29th August:

As Dad works close to Blenheim Palace he gets a discount so we decided to go and have a look around. It worked out well as if you agree to ‘gift aid' you can at no extra cost turn your day pass into a year one. We did this so next time the weather’s good we can go again.

The Palace and grounds are huge and there were lots of photos of famous political people that have visited. My Mom said she’s glad she doesn’t have to do the dusting there! We walked around the lake and the secret garden which Winston Churchill did as a child,  I think he was privileged.

After we went to Bloxham for a meal, it was pretty rubbish as it took ages to get the food and we were so hungry. Dad said it would have been quicker to drive home and cook a pizza!

It’s Tuesday and like most weeks I’ve got a hospital appointment,  this time at Opthalmology  in Worcester. These appointments are not too bad as they always run on time and the staff are very friendly. Mom and me cheat and park in the country park and walk through to the hospital to save on parking as it’s very expensive even with my Blue Badge. I see Miss Thurai and I use to be scared of her as she seems strict. Mom tells me to make biscuits or cakes for the staff at all of my appointments,  she said it’s good to build a friendship with them so they see you as person not just someone who is ill. I didn’t get it at first, but it does work as Miss Thurai always smiles and asks me how things are. When they write to my GP they always put ‘Ella bought cakes for us today which we were thankful for'.

Miss Thurai thinks after next year I can be discharged if my tumours don’t grow and my retinas can just be checked at my opticians. She said this before and changed her mind, I hope she means it this time.

On Friday I went to the dentist and my teeth are perfect! At least something going well for me. As a treat after we went to The Chateau Impney for afternoon tea with our friend Anne. She is from Liverpool and my parents have known her since they moved to Droitwich. When I was born my Mom was very ill afterwards in intensive care and I was rushed to the Children's Hospital in Birmingham, my parents had no one to get Rhys from school. Anne hadn't known them long, but she picked him up and gave him tea. Dad didn’t get to pick him up till 11pm as Mom and me were so ill. Anne and her family are good friends now. Anne is very funny, she does amateur dramatics.

The afternoon tea was lush, loads of sandwiches,  scones, cakes and pastries. They did a child's version which Anne preferred,  so she pretended it was for me!

Went to Sainsbury’s to help with shopping and the school stuff was on sale so I got all my stationery and school tights. I know it’s weeks to go, but I got my school bag ready with everything in. I won't worry now, I do like to have everything sorted as I panic and stress.

Friends from school don’t ever invite me out, so Mom and Dad try to do lots with me and today we're going to Milton Keynes. I’m not too worried about designer labels, so I went to Primark and got so much stuff. I was so excited and thrilled to have so many brown bags full of lovely stuff, even new school shoes. I did have a bit of a panic attack, so Mom told me to go outside and calm down. When I felt better I said sorry. Mom said “Come on don’t let it spoil the day”.  She took me to buy some blender sponges as I’m trying to learn how to put make up on properly.  Of course I went to my fave shop Tiger and bought new pencil case, diary, ‘nose sharpener’, headphones and a charger.

After we were all tired so went to Ask Italian, I had Calzone and it was so good.

Well CAMHS on the telephone again, they want to see me on 3rd September,  this is my first day back at school! I’ve said no, maybe you think I’m silly but I’m so fed up with hospital appointments and I miss loads of school. I then have to work harder than the other pupils just to catch up. School say don’t worry, then they tell me my grades are slipping! I just wish the they could see me at school.

Mom and me are getting quite good at making homemade fudge, it’s quite easy and fun to do. Today was our first go at ‘Cookie Monster’ fudge. It turned out well, the eyes were fiddly to put on.  I took some to our neighbour to say sorry as I got a bit upset and panicky the other day and started to shout a lot outside. He was really nice about it and said “We're ok Ella let’s just forget it”.

Ella's NTUK Style Fudge

Ingredients: 6 bars of cheap white chocolate (not cooking chocolate) 1 tin condensed milk, add Vanilla favouring (but you can add whatever flavour you like), blue food colouring (gel type is better), mini cookies, edible eyes.

Method for Ella's Fudge: 

  • Break chocolate up in slow cooker, add condensed milk and flavouring. Once melted stir every 15 minutes. It takes about an hour to get a smooth mixture. Then add your colouring and mix well. 

Ella's Tips: 

  • I use silicon moulds, but you can line a cooking dish with foil or grease proof paper and pour mixture in. When it's cool add eyes and cookie for a mouth.
  • If you want to do more you can join the Slow Cooker Chocolate Fudge Group on Facebook they are brilliant and give you lots of ideas.


We went to Banbury on Wednesday as we are thinking of moving there and my parents want me to get use to the place. We go to a really nice café called ‘Little Amsterdam’ all the meals are Dutch recipes. I always a Dutch breakfast and the owner recommended I try this Dutch syrup on my breakfast, sounded odd but it was lovely. She was telling us since Brexit was announced she’s had lots of abuse with people telling her to ‘go home’, yet she’s lived here a long time. She’s a lovely lady and I felt sorry for her.

It’s Friday and I went to Cheltenham to see my Ophthalmologist for my regular contact lenses check up. I have a special kind of contact lense to stop my eye growing and cause myopia. I’ve been using them for 2 years and they have been brilliant, my myopia hasn’t got any worse.  Mr Keogh said they don’t work for everyone, so I’m lucky. He asked me if Dad and I were going for something to eat after, I said I’d had a Cuppa Soup at home and he laughed.

Afterwards Dad took me to get my hair cut ready for school. I had 2 inches cut off and I’m really pleased with it.  Sometimes I really panic at the hairdressers, but I’ve got use to this salon. I’m not good with talking to people I don’t know well, but they’re ok with it and just get on with cutting my hair.

It’s Saturday and I had my first online tutor session for Spanish with a lady called Anna. I’ve been stressing over some of my GCSE subjects as I’ve had loads of hospital appointments and have to work harder to keep up. My Mom said to have a tutor so I can go over the syllabus with her. My brother is doing a Business degree and he is tutoring me in this subject, in return my Mom is paying for his train pass. My Spanish session went well and I really enjoyed it, I feel more happier now as I’m doing something positive to get my grades up.


I hope you’ve all had a brilliant summer, school not far away now!

Diary Start 15th August 2019

Oh no The Dark Lord came home earlier on in July. (The Dark Lord is my older brother’s nickname his name is Rhys and he doesn’t have Neurofibromatosis) He studies in Denmark and he brought back his girlfriend Emma, who is Danish, and I was so nervous about meeting her. However, when I met her she was nice and caring. We went shopping together and I also went to Oxford with them and looked around the campuses. The one funny thing that happened is that we took them indoor skydiving and Emma was afraid of heights and she chickened out and then a few weeks later, back in Denmark she did the high ropes which was higher than the indoor skydiving!

Ella in Oxford

A few weeks later I went to Italy with school and I loved doing the high ropes, even though I was scared I went up first with a teacher and I got over my phobia of heights.  I loved Venice because the scenery of the city was amazing and I went on a water bus to get back to the coach stop. When I was on the boat I saw many tall buildings and bridges. The downside of the trip was that teachers kept having a go at me because girls were picking on me. They tried telling me to just move on and didn’t tell the girls off.

At the end of July I went to collect my back brace from the hospital and I got told I would only have to wear my back brace for another three months. This means I would not have to keep having x-rays on my back. I find going to hospital really stressful and I argue with my parents a lot because I keep asking ‘Am I on the list?’ and when I get there I am indeed on the list! I also got told that I have to go to CAMHS when I told them I don’t want to go because hospitals are clinical and they keep saying it is not clinical, but I’ve been to CAMHS before and IT WAS clinical.

On 13th of August I went for a meal and I had cheese and beef garlic bread, a prime steak burger and profiteroles. I enjoyed going out with my family even though I felt really tired. You probably don’t realise, but I coloured my hair red. I thought I’d do it over the summer holiday, as school don’t permit it.

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca.

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