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Kian’s NF2 Blog

09 January 2023

Hi everyone, Welcome to Kian's Blog

My name is Kian and I have NF2. I am writing this blog so young people affected by NF and the general public will better understand the condition. Also, I want to inspire young people with disabilities to get involved in sports, either as a participant or a volunteer. There are plenty of opportunities, but they are not always advertised.

Follow my swimming journey, taking on various national and international competitions. Feel free to comment or ask questions on my posts and I’ll aim to respond to all of them.


Update July 2023

Oh my……sorry all. It’s been a busy couple of months.

We have been busy predominantly coaching rather than swimming. Due to our coach leaving our club recently, we have had to step up to help our club, along with taking on additional squads. But don’t worry folks, we are still training ready for next season in September, where we plan to take counties by storm. I’m now heading into my Summer Break where I am planning to have a chill and heading off to Turkey with the family. Can’t wait. 

In other news, I have started a new job also which I am absolutely loving. Can’t wait to see how I progress over the next couple of years. 

Overall, a busy couple of months but promise to keep you updated with more results and action soon. See you in September!!

Update January 2023

Merry Christmas and Happy New Year!

Hope everyone is well?

Well the last couple of months have been very hectic….we appeared in Nerve Tumour UK’s Sport Edition Magazine which was amazing! We travelled far and wide for numerous competitions, including travelling to Glasgow for the British Para National Championships, and we have enjoyed a lovely 2 week Christmas break and now we are in full swing into training, in preparation for 2023!

In Glasgow we achieved multiple personal best times, and the atmosphere was amazing.

Everyone was so supportive, and the venue used to be an ex-Commonwealth Games pool, so will definitely be one of my favourites for a long time.

So moving into 2023, many people have already asked me what my resolutions are?

To be honest, I don’t have any. 

I want to keep pushing myself and qualify for the same competitions as last year but to continue improving my technique, skills and stroke. I also want to make sure I make time for myself, so I can relax a little.

I have already started my next training cycles where we are focusing on technique 3 days a week and speed for the other 3. We are also trying to build my stamina up to cope with longer and harder events. Overall, we are stepping in the right direction to progress further.

Our next competition is Northamptonshire’s County Championships in Corby where I will be competing over 3 weekends across all events. I am looking forward to it as this competition gives me a perfect chance to reset all my times ready for the year and gives me a perfect starting point so I can adapt my training accordingly.

In other news I have also started my Level 2 coaching course, where I should be fully qualified as a swimming coach, by the end of January/early February.

Kian's National Para Swimming tee, designed by Kian

This gives me a chance to train and develop the next generation, as swimmers at our club, but also opens a lot of new opportunities which I can explore to further my swimming career. So, stay posted for that.

Overall, we are ready to get 2023 off to a great start, so let's go!!!

Update June 2022

Well, what a couple of months. We have competed across the country and smashed it wherever we went.

In May, we travelled to Sheffield to compete in the East Midlands Regional Championships.

I competed in 6 events in total which were 50 Free, 100 Free, 100 Back, 100 Breast, 100 Butterfly and 200 IM.

Overall all my events went brilliantly despite having doubts with fly and IM.

I also went on to get medals in all events except 100 Breast.

50 Free: Silver

100 Free: Bronze

100 Back: Bronze

100 Fly: Silver

200 IM: Bronze

100 Breast: 4th in Region

Overall my coaching team and myself are very pleased with my progress this season and can't wait to see what progress we can make next season.

However, we found out that my season isn't ending there!!!

I can now OFFICIALLY ANNOUNCE that I have qualified for Swim England Summer Nationals for 50 Free which is the first time that I have ever qualified for an able-bodied Nationals. Honestly it still makes me so happy even typing this now. This will take place in August alongside the Commonwealth Games.

But the good news doesn't stop there! I have also qualified for Swim England Festival of Swimming as well, which I will compete in just before Nationals as a practice run.

Stay tuned to see how I get on and I'll be in touch soon.

Update May 2022

Celebrating Neurofibromatosis Type 2 Day 

It was great to meet and show support to Patrick, who is another local boy and fellow NF2 Warrior, as he undertakes the 2nd leg of his his triathlon style challenge today. Markus from Nerve Tumours UK walked with us along the 7.5km route at Draycote Water, Warwickshire.

Patrick will be doing a 500m swim tomorrow, hopefully he picked up some swimming tips from me during our conversations today.

Update on the British Para-International Meet, Aberdeen - 03/2022

Hey guys,

Hope everyone had a good Christmas break and a Happy New Year!

What a time it has been for me over the last couple of months. Since the success at Nationals, I have been working as hard as I can, ready for the British Para-International Meet in Aberdeen.

However, before all of this I attended the Northamptonshire County Championships in Corby which took place in January. This was a great competition to get back into the swing of competitions after a nice week break over Christmas. I had entered myself into as many events as I could, to update my times from before COVID and to see if I could break some PBs. To my own amazement I did brilliantly. We managed to get all new Long Course (50m pool times) PBs in every event and even went on to beat some Short Course PBs (25m). We even won 8 County Gold Medals out of a total of 14 events!

I was happy with the progress I was achieving but was humble to all the work that still needed to be done. My main things that I felt I needed to work on, was my stamina and my efficiency in my strokes. As my coach always says, “Work Smarter Not Harder”.

"So, over the next week leading to Aberdeen, I worked on everything I could to make me the best I could be. THE BIG ONE. I was travelling to Aberdeen for the British Para-International Meet to swim alongside Paralympic Stars, Champions, and International Athletes. I couldn’t have been prouder. Just to compete at a competition like this was an achievement."

– Kian

We were in Aberdeen for a total of 5 days for this prestigious event. I set off on Wednesday, from Heathrow Airport to Aberdeen Airport, and was there in less than 2 hours, which certainly beat my other options of driving, or taking the train.

I used Wednesday to familiarise myself with the surroundings and logistics, of how far the pool was away from the hotel etc. I also managed to go for a training session on Wednesday, to get used to the pool and the diving blocks.

Thursday was my first race: 100m Free. A very happy result of 01:18.65 and a NEW PB, despite swimming it a week ago at Counties.

On Friday, I raced the 100m Breaststroke. This was another great result, with a NEW LC PB.

On Saturday, I had a rest day where I went to the cinema to go and see Tom Holland’s new films: “Uncharted” in 4D. Really enjoyed it and recommend it, if you haven’t watched it yet.

On Sunday was my final event: 50 Freestyle. Another happy result of 32.14.

Overall, I was happy with my performances and Thank You to everyone who supported me throughout, as it was amazing just to see my social media explode with support. I cannot tell you how much it encourages me to get better.

Another thing that I loved about this competition, was the fact that no matter what country or disability you have, we all supported each other, and everyone was a winner just to be there, after 2 years of pain.

Cannot thank British Swimming enough, for the opportunity and for hosting a fantastic gala.

So, what’s next?

I have decided to take a break from competitions, until the East Midlands Regional Championships in Sheffield, which is set to take place in May. I have chosen to do this, to allow me to improve further and allow me to solely concentrate on what I need to achieve, by this competition. After all, the end of the season is fast approaching and besides, I want to see if I can hit the normal National Qualifying standard! I will keep you posted.

For now, that is another update done and I hope to update all again very soon. 

ParaNationals update 12/2021

The main results were that I beat my personal bests in every race except 200 IM and 100 Fly.

It was a fantastic weekend and I learnt so much on what I need to work on before the next competition. 

Thanks for all the support.

Kian at the British Para Nationals 11/12th December 2021

The Comeback!  9.11.2021

Welcome back one and all

It has been a mental couple of weeks since I last updated you all. Competitions are now back and I can honestly say I have really missed it. The buzz you get as the starter says ‘Take your mark’ and you wait in pure silence, readying yourself to do the most explosive start ever. Unfortunately also, with competitions coming back, it does also mean I don’t have a free weekend until mid January 2022 but there is no place I would rather be. 

My first competition of the 2021/2022 season was Corby Short Course Open Meet which took place on 3rd/4th October.  I used this gala to see where I was at compared to pre-COVID. However I was shocked to find out that I beat all my times and even in the worst event known to a swimmer, 200m Butterfly, I got a silver medal and beat my previous time by 23 seconds! It was a massive win and gave me reassurance that I had been training well. 

The next competition was at Biggleswade. This gala was at the end of October. It was also an amazing success as I beat PBs from Corby and other times. I also had the great pleasure of getting a gold medal in every single event I did. Overall a major success for Team Daventry Dolphins and for myself on getting back and already smashing my times. 

In terms of my qualification news, I have started my Level 2 Teaching course so I can teach the next generation of swimmers.  I’ll promise to keep you guys updated. 

The next steps:I had Regionals at Nottingham on the 6th/7th November. We have our Club Championships on the 13th and 27th November.

However, the best news out of everything this month is: I have QUALIFIED FOR BRITISH PARA NATIONALS 2021/2022 in Swansea on the 11th and 12th December. 

It is an honour to always compete at Nationals, and you never know, I could get the chance to compete on an even bigger stage. I’ll keep you posted but for now signing off once again and see you in a month's time. 

If you can’t wait that long follow me on my social media:

Instagram: kian.saville

Facebook: kian.saville

Twitter: kian.saville

My first competition in 2 years - 09/2021

Well, where do I start?  What a month. I still can’t believe how quickly this month has gone. 

So I returned for my first club competition, The DDSC Club Sprint Championships, which is when we compete in all the 50m races and our 100m Individual Medley. This consists of doing 1 length of every stroke, for those who are not savvy with swimming terminology.  It was a great event to start my competing journey again as I haven’t competed for 2 years because of COVID.  

I also smashed all my PBs which I was over the moon with. 

Training has been tough for the last couple of weeks and my coaches have been pushing me hard. I am extremely motivated at the moment as I am desperate to get back to International Competitions, especially after the Paralympic Games. 

Also this month, I was lucky enough to compete in Swim England’s Summer Festival, which was a regional gala to showcase the sport of swimming.  I competed in the 100m Breaststroke and 100m Freestyle. 

My results:

100m Breaststroke - 01:42.36 (3 second PB and now one of the fastest S10 swimmers in the country) ; 100 Freestyle - 01:19.14 (3 second PB)

I am over the moon with my results and definitely shed a tear or two after the breaststroke. 

I dedicate the blog update to my swimming club, Daventry Dolphins Swimming Club as I would never get these results without the hard work of my coaches and the constant support I get from my friends and club members. 

Overall, an amazing set of results and the perfect way to finish the season as I am now taking a break and will return strong to start again in September. 

Not the longest update but hope everyone has a lovely summer break and see you again in September 

It’s Only The Beginning - 05.07.21

Welcome back everyone, hope everyone is keeping safe and well?

Since the last time I checked in a lot has happened in the swimming world. Competitions have returned and both Olympic and Paralympic Teams have been announced ready for Tokyo. However, things have been also a little different compared to my normal training. For the last couple of weeks, I have been working hard to complete my Level 1 Coaching Qualification and Level 1 Teaching Qualification. 

As well as being a swimmer for my club I am also a valued committee member where I help run our website, email system, fundraising and due to me being a team wear manager as my full-time job I am, also team wear liaison. As well as all my committee work, I am also a committee member for the county inspiring change across the county in all swimming disciplines, including diving, water polo, and synchronised swimming. However, I am also a coach for the club where I help coach several of our developing swimmers. Because of this, the club has put me through these qualifications to develop me as a coach further so I can best support our swimmers achieve their goals and dreams. I am happy to say that I have PASSED both qualifications with flying colours and have been recommended on two separate occasions to complete both Level 2 Coach and Teacher. These qualifications can help me in the future as if I retire from swimming and hang up my trunks I can get either a job as a Swim Teacher teaching little kids to learn how to swim or as a full-time swim coach for either the same or different club. 

In terms of competition news, I have just entered our club sprints championships to gauge where I am to my PBs as I have swum competitively since December 2019 however I am hopeful as I am working very hard in training and have made some amazing progress over the last couple of weeks. Also, I have entered a regional competition called Midlands Summer Festival which is a competition to get inspiring swimmers back to racing. I am very excited about this as well as I will be competing and being a coach representing both para-sport and my club. 

Overall a very good couple of weeks and lots of exciting stuff in the pipeline. I promise I will keep you guys updated on my progress.

Hope you have enjoyed it and catch you next time……. 

Welcome to My Blog! - 03.06.21

My name is Kian and I’m 21 years old. I have been diagnosed with Neurofibromatosis Type 2 for 10 years now.

My family has been supporting Nerve Tumours with numerous fundraisers and donations. The charity is and was a massive help since my first diagnosis. They really helped us understand my condition, how it could affect me and what impact it can have on my future.

The charity is still checking in with my family and I regularly meet the Specialist NF Nurses, an integral part of my medical team. The NF2 nurses provide valuable input on both my mental and physical health at my regular check-ups. They also have been fantastic about transitioning me from paediatrics to adult services. Believe me, there is a huge difference in my life because of this support. Without Nerve Tumours UK, my family would be stranded; as there is very little research and development with NF2 in the medical world. Their help is an assurance to my family. I am in the right place and have always had the right care for my condition.

Despite all of this, I am a passionate swimmer continuing my training throughout every medical challenge I have faced. Having a passion for swimming since I can think, my parents even said that I learnt how to swim before I could walk.

In the beginning, I started by going to swim school with my sister where we both progressed very quickly. By the age of 10, both my sister and I were at the highest level of swim school, until one day a scout from our club spoke to my mum and dad to enrol my sister and me into a trial. From that point onwards we never looked back. We still continue to train 5/6 days a week. Over time I managed to qualify for multiple competitions. Then my first diagnosis happened, which also explained my epilepsy. This obviously affected my training. In 2013 I started to get numb on my right arm, which was a trigger for my medical team to decide that I needed to start chemotherapy for my NF2 tumours. The epilepsy was a dangerous underlying condition whilst on treatment, so the only option was to undergo 2 operations to remove the epileptic tumour. The total surgery time was 22 hours!! This is a lot to take in for a 13-year-old boy....

Since this operation I have been epileptic free for 7 years this helped me to focus on my training. I am currently a part of the Team GB Talent program for swimming and have competed at the World Para Series every year for the last 2 years. I have also won a gold and bronze medal at the British Para Championships. My aim is to compete for Team GB in 2024 and 2028 Paralympics. 

Besides my swimming and the implications that come with my condition, I also work part-time for a local teamwear brand and help design, manufacture, and create teamwear for a range of sports. I love it to pieces. It is great to see my designs turned into reality!

Back to swimming and my sporting ambitions. I volunteer regularly for my swimming club, and I am currently going through my coaching qualifications. One day I will be a para-swimming coach, to help pass on the experience and knowledge I have learnt over my many years as an active athlete, and support others at the beginning of their journey and throughout their ambitions.  

The last couple of months have been a struggle regarding training due to restrictions that we all had to face. I have been doing everything I can in terms of training to be prepared for my return to the pool. For example, during lockdown, I made sure to do at least a 1-hour workout per day and my mates and I have a challenge to do 100 push-ups a day. Obviously, this was a struggle on some days! Good news then came on the 12th of April following the easing of restrictions. I was able to return to the pool and have been training as much as possible to get ready for the competitive season ahead, as all competitions have been suspended until September this year. My aim is to get my stamina back, so eventually, I will return to my PBs that I set before COVID-19.

Well, hopefully, that gives you a good insight into where I am right now. Make sure to follow me over the next months to see how I'm getting on. Kian signing off for now……..

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière , Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

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.

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK