Break Kickstarter With Carbyne Jungle: The New TTRPG

By Jay in Spotlight 1 Comment

Nor Cal Mythos is an Independent Game Design Studio based out of Salinas, California. The three lead designers have degrees and education in silly things such as Literature, Liberal Studies with Human Communication, Math, Business, and much more importantly approximately 70 years of combined experience in tabletop games including world design, mythology building, and relentless tormenting of parties with endless ravenous hordes of monsters seeking their deaths.

We have experience working in education, technology, editing, and business. Even better, we coach sword fighting to 7th graders, write fantasy novels, and have been building game worlds since we were 12, and one of us may or may not be the star of a majestic internet meme (too much fun was involved to be certain, and it was 15 years ago)… and one’s a cook!

Welcome to the jungle …

Carbyne Jungle is not the first system that we have built, but it is the first we are publishing and by far the best work we have ever done. It is the culmination of decades of experience with various systems, tweaking rulesets, and determining what we believe would be the best gaming experience possible. 

In Carbyne Jungle, we created a game system designed around everything we love in RPGs.

  •  Story: Carbyne Jungle takes place in an expansive universe filled with fantasy and sci-fi elements, a deep backstory, and a rich setting filled with quest seeds to get games going.
  •  Options: Our characters are completely customizable. Choose between hundreds of options of backgrounds for millions of possible combinations of abilities. 
  •  Fun: We designed our game engine with three styles of gameplay for players of all skill levels, all of which can be played simultaneously. Beginners can join right into the game using a simple ruleset and not miss out on any of the fun as they learn the Stock or Strategic rules.
  •  Unique Gameplay: In addition to  traditional roleplaying, we have an autorun game for times when no one wants to GM, and a card system to assist in gameplay and in creating random dungeons. Not only that, but we built an amazing combat system that really gets players into the game.
  •  Game Decks: Our game decks make playing simpler, are used for the Flip N Fight rule set that allows brand new gamers to jump into the RPG, and also for premade games that the entire gaming group can play. Those decks can also then be shuffled in to create random quests for players.
  • Don’t take our word for it. Check out the free Playtest! While stripped down compared to the regular game, it has the full rulesets and several of the species and character types of Carbyne Jungle!

To find out more, and to support their AWESOME Kickstater, go here:
https://www.kickstarter.com/projects/carbynejungle/carbyne-jungle-the-new-ttrpg

Reading at Flash Fiction in the Orchard Armagh Event September 19th.

By Jay in Updates 0 Comment
Image of words Flash Fiction spelled out on post-it notes.
Written poste-haste!

Flash fiction is something that I have become very fond of; part prose, part poetry, and all wonderful narrative, telling a story in as few words as possible can be as rewarding as it is complex. Distilling a novel’s worth of experience into a few pages, or even a few paragraphs, means that you must pay attention to not just every sentence that you write, but every word that you choose. If done properly it should reward the reader too – hopefully – with a concise and concentrated dose of literature where, in a lot of cases, mood and tone maters more than plot because you are starting near the end of the story itself.

And that is what makes it so addictive, as both a writer and reader, to keep on doing.

I’ve been very lucky to have had my shorter work – six-word stories, drabbles (100 word), micro fiction (less than 250 words), and flash fiction – published but, more so over the last year I’ve had the absolute pleasure of being invited to read at Flash Fiction Armagh events in various venues in Northern Ireland. On the 19th September 2019 I’m going to do it again 🙂

This time I’m going to be reading a dark fantasy/speculative fiction piece (with a splash of humour thrown in for good measure), called ‘Playing Both Sides’ which I wrote during Pride month and plays on my love of geekdom and the underdog.

Flash Fiction Armagh this time takes place as part of the award-winning Armagh Food and Cider Festival; the readings take place in a teepee in the grounds of Crannagael House, which should be amazing! It promises to be a lot of fun, with cider tasting, locally sourced food, music, and of course all of the fabulous stories from the amazing writers (and me 🙂 ):

Gaynor Kane At Castleward

Maria Mc Gilly Green and Bitter

Csilla Toldy Wallflower

Jay Faulkner Playing Both Sides

Rachel Toner On The Shelf

Kerry Buchannan The Ages of Nan

Tim Hanna The Birds

Rosemary Tumilty The Homecoming

Ellie Rose Mc Kee The Caller

Brid McGinley Dogs in Space

Gerry Mc Cullough Not Quite Dead

Lorna Flanagan Boots Trudged Across the Yard

Yvonne Boyle The Silver Casino PlayerGary Hunter Rain and Smoke

With thanks, as always, to Byddi Lee and Réamonn Ó Ciaráin, the organisers of Flash Fiction Armagh, for this opportunity!

For more information and tickets (£10) click here.

Gatwick drone incident – when is terror ‘terror’?

By Jay in Musings 0 Comment

The drone incident at Gatwick is the most disruptive airport trespass in UK history, and authorities have stated that (obviously) it is intentional but have stopped short at calling it a ‘terrorist’ act.

Gatwick’s runway has been shut since Wednesday night; About 110,000 passengers on 760 flights were cancelled at one of the UK’s busiest airports, having a knock-on effect across, literally, the world.

The Army has been called in to assist Sussex Police in the incident with helicopters and even snipers on the lookout for the perpetrators and potentially shooting down the drones.

In the past terrorists used guns and bombs to take lives but also to instil fear and disrupt elements of the running of critical national infrastructure and just our way of life. When this became harder to do they started using cars and vans to drive into crowded public areas, or attack us with knives and other ‘at hand’ weapons, again to not just take lives and injure, but to cause fear and disrupt our way of life.

… one of the UK’s busiest airports, a part of the Country’s Critical National Infrastructure and a gateway to Europe and the rest of the World, is currently shut down. There are approximately 11,000 people stuck at the airport and ten times that many people who simply have been left abandoned from their destinations. They been left in fear too because the news reports are saying how easy it would be for a drone to take down a plane; to cause a plane to crash. They are in fear because they are seeing armed police men in the grounds of the airport and Army snipers. They are seeing police helicopters. And they are far from home and stuck with nowhere to go.

If that isn’t the definition of ‘terror’ then I don’t know what is.

If terrorists started with bombs and guns, then moved to cars, vans and knives, could they now have moved to drones …to toys …to take down a massive part of the British transport system, right before Christmas, and instill a new type of chaos and fear, with such ease?

If so, that thought alone is actually terrifying!

The problem with palm oil, and how to stop it!

By Jay in Musings 0 Comment

You know that advert, by Iceland (UK supermarket) – at the bottom of the post – which has been banned for being ‘too political’? Well it has made me think about the products which we use which contain palm oil in one form or another, and how I’m not doing enough to reduce what I use or at least try to start using products which are sourced/produced in a responsible manner.

I mean did you know that palm oil is the MOST widely consumed vegetable oil on the planet? It’s also in about HALF of all packaged products sold in the supermarket. The thing is that it isn’t always clearly labelled as palm oil so we don’t even know that is what we are buying! Palm oil and its derivatives can appear under many names, including: Vegetable Oil, Vegetable Fat, Palm Kernel, Palm Kernel Oil, Palm Fruit Oil, Palmate, Palmitate, Palmolein, Glyceryl, Stearate, Stearic Acid, Elaeis Guineensis, Palmitic Acid, Palm Stearine, Palmitoyl Oxostearamide, Palmitoyl Tetrapeptide-3, Sodium Laureth Sulfate, Sodium Lauryl Sulfate, Sodium Kernelate, Sodium Palm Kernelate, Sodium Lauryl Lactylate/Sulphate, Hyrated Palm Glycerides, Etyl Palmitate, Octyl Palmitate, Palmityl Alcohol.

Seriously how many of us (unless we have life threatening allergies) really take time to look into, let alone understand, food labelling when it is as detailed as that?

Sometimes, it can be clearly labelled as ‘palm oil’ but it will be in the small print and only say it ‘contains’ and won’t be up in the major ingredients list so its easy to miss.

The thing about palm oil is that it grows in tropical rainforests, the habitat of endangered species, including the ‘rang-tangs’ or orangutans in the adverts, but also tigers, elephants and rhinos but also insects and flora as well as tress themselves that are cleared to make way for fore ‘harvesting’ of the oil.

Palm oil is NOT necessary in anything it is used for, it is simply useful: in some chocolate it is used in it makes it look shinier and helps it keep from melting for longer in higher temperatures; in lipstick it keeps it glossy and helps reduce it’s taste; in margarine it keeps it solid at room temperature; in ice-cream it makes it smooth and creamy; in instant noodles it helps pre-cook them so all you have to do is add water.

The list goes on but, simply put, palm oil helps make human life easier while DESTROYING pretty much all other life we take it from.

We DON’T need it!

They DO!

The thing is, us humans don’t even need to cut it out of our lives completely either because that might be too difficult, and it also might put a lot of people out of jobs that they rely on to survive. What everyone CAN do, however, is to try to only buy products which were produced in a socially and environmentally responsible way. Look for the RSPO label to ensure you purchase products made with certified sustainable palm oil. If you can’t find the RSPO label then look for the Green Palm label! This label indicates products in support of the transition to certified palm oil. Proceeds from Green Palm certificates help growers fund the transition to sustainable palm oil. Both of these things will go a LONG way to help.

Also, if you live in the UK shop in Iceland and especially use Iceland’s own products because they won’t be using palm oil in ANY of their stuff from now on and that is an amazing thing so support them!!!

The pretence of health care in America, and it’s echo on the NHS #health #nhs #disability

By Jay in Medical 0 Comment

 

A Facebook friend in America has just posted that one of the drugs she takes for her myasthenia, a drug I also have to take, has increased from $14.70 to over $403 per month!

That’s a life saving at best, or life changing at worst, drug that’s being priced out of people’s range so companies can profit and screw the humans who are suffering as a result.

They’re not even pretending to provide health insurance anymore, let alone health care, it’s now just health for profit and if you can’t afford it is bankruptcy, suffering, or death. No civilised country should treat its people like this, but then I suppose that’s a very clear sign of spotting an uncivilised society when money and profit is worth more than peoples’ lives.

Thankfully, for now at least, the UK still has the NHS, where health care is seen as a basic human right, not a privilege, and it’s paid for and supported via taxation (not free as too many journalists mistakenly state) or otherwise, if I had to pay $403 a month for just ONE of my tablets – and then who knows how much for the other nine (including an opiate based one which I’m sure wouldn’t be cheap) – it wouldn’t matter that I earn a more than comfortable living, I couldn’t afford just my monthly medicine. The medicine that keeps me healthy. Keeps me functioning. Keeps me alive.

If I had to pay for my monthly medicines I’d be bankrupt fast, and suffering soon after. Then I’d probably be dead.

And I’m what’s probably best referred to as a high functioning disabled person.

There are people with more medical demands than me. There are people with less money than me. There are people with a combination of both.

So, if the UK ever goes down the route were it allows health care to become a for profit business, where a medicine or a prescription that one month cost £14 pounds suddenly, the next month, cost £400, the same as a mortgage payment, for ONE drug, people will go bankrupt. People will suffer. People will die.

And the scary thing is the fact that this practice in America is not just allowed, but openly tolerated and flouted as one of the world’s best health care systems, should be terrifying because the UK, and it’s Government, is slowly but surely privatising disparate parts of the NHS off; they are opening to tender whole dialysis units and allowing them to be run by private companies; whole hospitals are being built, managed, and run, by private trusts; and bit by bit the NHS as we know it is disappearing as the Government decries the missed targets and long waiting lists, but constantly underfunded and undercuts it, deliberately weakening it while giving more and more to the profit making private sectors.

So while we look on in horror at America when essential medicines increase ten or a hundred fold, and wonder just how the Martin Shreklis of the world could come to be, we have to be careful that we aren’t neglecting to keep an eye on our own back yard, and the slowly disappearing NHS because, one day, it could be us realising we can no longer afford our life changing, our life saving, medicine. But, by then, it’ll be far too late.

 

When #identity is not your own #equalityni #monitoring

By Jay in Medical 0 Comment

All views my own, of course!!!

Through my whole career with Probation in Northern Ireland, from the moment I filled in the application form, I have been honest and upfront about my political and religious leanings and filled in my ‘Monitoring Form’ (where details about my ‘background’ such as gender, sexuality, nationality, ethnicity, disabled status, etc are captured) completely honestly.

Northern Ireland is rather peculiar about the religious aspect in particular, as they try to force you to put Protestant or Catholic, even when you are not, and what you are ‘perceived’ as being depending where you went to school or lived. As I have no religious persuasion at all, and have moved around various countries, and many schools (including, state, catholic run, and public/boarding) I thought that I had passed their idiotic grilling 16 years ago when I pointed out that I was indeed an agnostic, I did indeed have family of both religions, I did indeed go to schools run by both (and neither) religions, and lived in an area which was neither predominantly Catholic nor Protestant and, also, as I had lived extensively outside of Northern Ireland and could be perceived as English, British, or even European in background, I didn’t think there was an issue …in fact I had even been ‘used’ in recruitment panels as ‘other’ when there was an imbalance in religion members on the panel.
 
I’ve also made a conscious effort to advocate for integration in Northern Ireland, putting both my kids to school where religion isn’t the driving factor (like in the majority of segregated schools here) and have discussed/argued extensively with MPs, MLAs, and Ministers on the topic.
 
So imagine my surprise (horror and disgust) to find out today that someone, at sometime, has taken it upon themselves to choose my community background/religion for me as ‘protestant’?! Not only that but when I raised it with HR I was told that it may not be changeable because it is now a matter of public record with the Equality Commission.
 
…i was told that perhaps someone decided I was ‘perceived’ to come from that background after all and they should have notified me. Well screw that. I don’t actually give a damn on either front. No-one has the right to decide that for me in the first place, it is MY choice what – if any – religion or background I have and, NO-ONE notified me about anything or I would have put a stop to it back then.
 
As for not being able to change it …WATCH ME!!!
 
If someone had decided my gender or sexuality for me, or decided not to accept my choice, do you think that we’d be having this conversation now? No, I don’t think so! So why should my religion/background be any different?
 
Also, for whatever reason – despite my disability being announced and known about in a business/corporate setting since 2001 (and me falling afoul of HR/sickness policies since then to date thanks to my disabilities) in the HR monitoring details I am not listed as being a disabled member of staff either.
 
So, looks like monitoring and correct capturing of information matters …but only when it matters to them!!!
 
/rant

REBELLION UNVEILS CREATIVE TEAM BEHIND ROY OF THE ROVERS REBOOT

By Jay in Updates 0 Comment

 

Phenomenal UK talent from the worlds of comics and children’s fiction sign on for the return of a football icon. 

Rebellion Publishing is proud to reveal its latest set of signings:  the creative team for the highly anticipated 2018 reboot of Roy of the Rovers. 

Internationally acclaimed comics writer Rob Williams (Amazing Spider-Man, Adventures of Superman) and artist Ben Willsher (2000 AD, Doctor Who Magazine) are the team behind the brand-new Roy of the Rovers graphic novels, beginning with Roy of the Rovers: Kick-Off, to be released 6 September 2018.  Best-selling children’s author Tom Palmer (Football Academy, Foul Play) takes the lead on Roy of the Rovers: Scouted, Rebellion’s first foray into middle grade fiction, to be released 4 October 2018.

Also on the Roy of the Rovers team sheet is graphic novel editor Keith Richardson, and Rob Power, who will be editing the middle grade fiction alongside his role as Roy of the Rovers Brand Manager.  

•  Rebellion to launch a brand new, rebooted Roy of the Rovers in 2018.

•  Leading British comic talent Rob Williams and Ben Willsher are the creative team behind new Roy of the Rovers graphic novels.

•  Best-selling British children’s author Tom Palmer to write Roy of the Rovers middle grade fiction. 

•  Publishing plan includes three 56 page hardback graphic novels per football season, launching in September 2018, January 2019 and April 2019.

•  Middle grade illustrated fiction titles to be released alongside the graphic novels, launching in October 2018 and following on in February 2019 and May 2019. 

For more information please contact Roy of the Rovers brand manager rob.power@rebellion.co.uk. 

Rebellion CEO Jason Kingsley OBE commented: “Roy of the Rovers is an enormously exciting project for us, and we’ve been working hard to ensure that we respect the legacy of this iconic British character. We’ve assembled an incredibly strong team to bring Roy Race back for the 21st century, and I look forward to following Roy’s journey through the always exciting world of modern football.”  

Rebellion Head of Publishing Ben Smith commented: “We’re delighted to have such a high calibre of creative talent on board for our reboot of Roy of the Rovers. Rob, Ben and Tom’s stories are bursting with all the excitement, drama and football fervour of the classic Roy of the Rovers comics, while giving us a thoroughly modern take on the character.  We can’t wait for a new generation of fans to read them.” 

Rob Williams commented: “I read and loved Roy of the Rovers as a boy – I even had the old Gola Melchester Rovers kit – and I have very fond memories of the Roy annuals arriving on Christmas Day with wonderful David Sque art on their covers. Roy’s a British football icon. Even now, a ‘rocket’-like goal is a Roy of the Rovers moment. So I’m delighted to be part of the passionate team bringing Roy’s adventures to a new era of football fan.” 

Tom Palmer commented: “Millions of girls and boys dream about being their favourite football player and being scouted and playing for their favourite team. I had that dream. Sadly it didn’t come true for me. But, being scouted and succeeding in my trial to write Roy of the Rovers fiction is a dream that has come true. There is no other fictional footballer I would rather be and write. And I intend to write these books with the same passion and commitment Roy shows when he pulls on the red and yellow of Melchester Rovers.” 

Ben Willsher commented: “Roy of the Rovers was a big part of my childhood. The annuals stacked up in my bookshelf, and the comics burst out of my cupboards. Growing up I dreamed of helping Roy score goals and lead Melchester to the top…. I finally get to do that- result!”

 

 

Rob Williams is a writer, mainly of comic books. He is currently writing Suicide Squad for DC Comics, where his previous credits include Martian Manhunter, Batman 66, Sensation Comics, Adventures of Superman, Legends of The Dark Knight, and Madame X. He has also written Doctor Who: The Eleventh Doctor for Titan Comics, and Amazing Spider-Man, Wolverine, Captain America and The Falcon, and Revolutionary War for Marvel. His Rebellion credits include Judge Dredd, The Ten-Seconders, and The Grievous Journey of Ichabod Azrael for 2000 AD. Rob supports Arsenal. In 5-a-side he is, sadly, more Nigel Winterburn than Thierry Henry.
For more information, visit www.robwilliamscomics.co.uk

 

 

 

Tom Palmer is the author of 40 books for children about sport and history. His books include the Football Academy and Foul Play series, published by Puffin, as well as Over the Line, a fictional account of the World War One Footballers’ Battalion. Tom is a regular speaker in schools and works closely with organisations like the National Literacy Trust and the British Council to promote reading for pleasure.
His website is www.tompalmer.co.uk

 

 

 

Ben Willsher is a British comics illustrator, whose credits include Judge Dredd, Durham Red, Strontium Dog, Tharg’s Future Shocks and Sinister Dexter for 2000 AD, alongside extensive cover work for both 2000 AD and the Judge Dredd Megazine. Ben has also illustrated several stories for various Doctor Who annuals, and his work has been regularly featured in the Doctor Who Magazine.
For more information, visit www.benwillsher.co.uk

 

 

 

 

 

Rebellion is an internationally renowned video games developer/publisher and leading publisher of comics and fiction, based in Oxford, UK. Founded in 1992 by Chris and Jason Kingsley, Rebellion’s titles include the bestselling Sniper Elite series, the wildly popular Nazi Zombie Trilogy, and PlayStation VR title Battlezone. The company is home to legendary UK comic 2000 AD and is the proud custodian of Judge Dredd, and recently acquired an extensive archive of Fleetway comics from Egmont UK, in a deal that included titles such as Roy of the Rovers, Misty, Charley’s War and many, many more. The publishing division is also home to award-winning science fiction imprints Solaris and Abaddon, and is proud to publish some of the finest talents in genre fiction.

 

Roy of the Rovers is the stuff of legend. Charting the career of charismatic Melchester Rovers striker Roy Race, Roy of the Rovers first appeared as a strip in Tiger in 1954, proving an instant smash with football-mad boys. Graduating to its own comic in 1976, Roy of the Rovers was where a generation of British football fans went for drama and glory, and ran for over 800 issues. Extolling the virtues of fair play, teamwork and great goals, Roy of the Rovers is the definitive football comic, and is set to return in 2018.

 

 

Reading of ‘Rain’ at Flash Fiction Armagh (blog post with media file)

By Jay in Updates 0 Comment

On Thursday 22nd March I was invited, along with a selection of other Irish authors, to read at the inaugural Flash Fiction Armagh event held in the Mulberry Bistro in Armagh City.  The venue was beautiful, situated opposite on of the city’s two picturesque cathedrals – hey, why have one cathedral when you can have two, right! 🙂 – and there was a very lively and appreciative and receptive crowd in attendance.

The event was very ably organised by Byddi Lee, who coordinates a writer’s group in Armagh City, and herself grew up in Armagh and moved to Belfast to study at Queen’s University. She has since lived in South Africa, Canada, California and Paris before returning to live in her hometown, Armagh relatively recently. She has published flash fiction, short stories and, in 2014, her novel, March to November. She is currently working on a trilogy that starts in Armagh in the near future, where the elderly have suddenly begun to get younger with devastating consequences. Byddi also blogs about life, both at home and abroad called, “We didn’t come here for the grass. www.byddilee.com.

The line-up for the first Flash Fiction Armagh event was selected after their work was submitted for consideration and can be seen below:

Jay Faulker, ‘Rain’
Catherine Carson, ‘Spectrum’
Réaltán Ní Leannáin, ‘Dílis’
Damien Mallon, ‘Reading The Trees’
Pamela Brown, ‘Mansfield House’
Réamonn Ó Ciaráin, ‘The Boy Corps of Eamhain Mhacha’
Trish Bennett, ‘Power of a Peeler’
Karen Mooney, ‘A Fond Farewell’
Seán Ó Farraigh, ‘Neamhchiontach go dtí go gcruthaítear a mhalairt’
Christopher Moore, ‘The Dark Hedges’
Malachi Kelly, ‘Scoring in the Seventies’

It was a really, really strong mix of genres and styles including darker fiction, mythology, poetic literature, etc; while I suppose us writers shouldn’t have our favourites – maybe it’s like choosing between our children – for me (even though it was extremely hard as their wasn’t a single weak story in the whole night) I had two stand-out pieces: Karen Mooney’s’ A Fond Farewell’ was a very personal story about the passing of her father but it was told in such a way that it was about the loss of everyone’s loved ones but it never got saccharine or even maudlin, it was celebratory as well as loving.  Catherine Carson’s ‘Spectrum’, for me, though was the stand-out story of the night; it told the tale of a moment in time – probably no more than minutes, at most – in the day in the life of a mother and her growing up too fast/too soon/too hard son with autism, but it also told the tale within a tale of that same son when he was still a small child when he looked at her, and really saw her, and how quickly that moment passed. It was a tale of love and struggles, and constant tiredness and never giving up. I adored it. I adored Catherine’s writing. I cannot wait to read more of her work!

One of my sons, Mackenzie, was with me – and persuaded me to let him stay out waaaaaay after his bedtime – and when asked what his favourite part of the night was, or his favourite story was, he just looked at me, wide-eyed, and said three words: “All of it!” Fair to say he enjoyed himself …though you’d think that there’d have been at least some nepotism in there and he might have said ‘Rain’, ey?! 🙂

For me it was only one of a double handful (certainly less than 10) times I’ve done a public reading – more if you include times I’ve spoken about medical matters I suppose but I don’t count them  as, unfortunately, they may be science but their definitely not fiction 🙂 – and only the second that I’ve been filmed.  I normally don’t even like photos let alone videos but, this time, I just rolled with it (a very dear friend of mine, whose advice I constantly listen to and always ‘try’ to follow …even if I don’t always manage to ‘do’ it … called Mercedes is amazing in front of the microphone and screen and when I interviewed her on the radio I recall she said just ‘be yourself’, and is always just that, she just rolls with things, no matter how hectic – and our lives are ALWYAS hectic 🙂 ) so I’m taking her advice, again, and posting the video of me, my actual face, my actual voice, reading my actual words.

So one more random weird thing: at the reading I read my piece, ‘Rain’, which is about a fireman who is in the middle of a search and rescue operation for two boys lost in a flood; it’s not the happiest of pieces, and told in first person, from the perspective of the dejected, tired, and very cold fireman who is losing hope very fast. I was told, afterwards, that people enjoyed the story and I read well but – and I’m SO glad I didn’t know this in advance! – there was an actual fireman in the audience and he told me he loved it and I’d really captured the feelings and atmosphere well but … someone that could have been the protagonist was there, listening to me talk about him.  Yeah, no pressure!!!~

Anyway, here is my reading:

 

 

International Wheelchair Day

By Jay in Medical 0 Comment

1st March is International Wheelchair Day.

Mackenzie, my son, unlike some other wheelchair users, doesn’t have to use his full-time; due to his muscle condition and hypermobility, he can fatigue extremely quickly and recover slowly so the chair is there to ensure that he either 1/ has the energy to do the things that he wants to do by allowing him to rest in between and not waste energy needlessly or 2/ have a safe refuge to be when he’s exhausted and unable to go on when he’s in pain or too fatigued to continue.

He loves his chair because, to him, it’s not medical equipment it’s his slice of freedom and normality that allows him to do things which, otherwise, he may not be able to do.

Other people just need to see wheelchairs, and wheelchair users, as a normal part of everyday life and give them more acceptance and accessibility so that an even more positive impact can be made.

Rare Disease Day 2018 – Meet Enzo

By Jay in Medical 0 Comment

Enzo is the youngest star of this year’s Rare Disease Day video and has just turned 5. (Like me) He also lives with Congenital Myasthenic Syndrome, a neuromuscular disease, which affects the strength of his muscles. Congenital Myasthenic Syndromes affect the way the motor nerve controls the movement of the muscles which act. As a consequence Enzo’s eyelids remain half closed (Ptosis) and Cindy, his mother, says that she is often told that he looks tired and that he needs rest by people in the street (that’s something that I am very familiar with too – that or that I look drunk, which is odd as I don’t drink!!!). Because of how the rare disease affects his muscles, Enzo fatigues easily and so uses a wheelchair most of the time, though he loves to walk for short distances where possible.

Enzo was diagnosed with his rare disease 5 months after he was born and spent much time in hospital where he was misdiagnosed or even told that he was not ill at all. (Again something very similar to what my parents went through for many years too, despite the many symptoms and issues, because the doctors weren’t aware of the condition they didn’t believe it existed!) At one point Cindy was even told that she was ‘crazy’ but, knowing that something was not right, she persisted and, after moving hospital, managed to find Enzo’s diagnosis within 3 days. The struggle to be diagnosed is something common to rare disease patients due to the lack of knowledge of the symptoms and consequences compared to more common diseases. (It took 16 years for my first diagnosis and this only came from a ‘complication’ with anaesthetic – malignant hyperthermia where I technically died in the operating theatre – which led them to realise that YES there was an actual issue with my muscles, which led to a batter of tests during a 6 month stint in hospital, including muscle biopsies, and an eventual diagnosis of congenital myopathy before, many years late, congenital myasthenia.)

However after Enzo was diagnosed with Congenital Myasthenic Syndrome, the next challenge was finding people to help with the care aspect. Finding a physio for Enzo was difficult with his specific rare disease, again due to the lack of knowledge. Cindy had to put her job to one side as she looked to find the best form of daily care for Enzo, whilst also considering the needs of his older sister, and keeping up with the paperwork needed to ensure Enzo kept all of his rights to care. Day to day he has to take medicine at fixed times and twice a week has physio sessions to improve his muscle strength. Due to the scoliosis caused by Congenital Myasthenic Syndrome he has sessions to improve his lung strength.

Despite all this Enzo remains a boy who can’t stop smiling! One of his main interests is the world of cinema and music and so he was very excited to appear in the campaign video. He has met many celebrities including Kendji Girac, Helene Segara, Claudio Capeo and Mimie Mathy. That said he still hasn’t met his favourite celebrity of all, Spiderman, though to Cindy he is her own superhero.

(Enzo, like all kids with CMS – and I have met many of them, including one of my own – is definitely a hero!)

https://www.rarediseaseday.org/videos

#ShowYourRare

Main text comes from Rare Disease Day and text in brackets is my own.