A Rare Chronic Illness, A Book Review and a Love Letter – “Leo and the Lightning Dragons” #LoveBooksGroupTours

This is a special post today and it feels fitting that it falls on Valentine’s Day.  It combines a very rare chronic illness alongside a review for a book that I hope you will agree is a labour of love.

Have you heard of Ohtahara Syndrome? No, me neither.  It is a very rare form of epilepsy and seizures  usually start before the age of 3 months, often in the first days after birth.  In fact after birth and the first signs of seizures, some mothers realise that their baby has been having seizures whilst still in the uterus.  This form of epilepsy does not respond well to traditionally used seizure medications and treatment is very difficult.  Many babies will be floppy, have difficulty feeding and suffer repeated daily seizures.  The prognosis is poor. (Epilepsy.org.uk)

Leo White is a little boy who has Ohtahara syndrome and suffers many seizures daily that are as yet uncontrolled. When I was asked to review this book that his mother has written for him, I was delighted to be able to.

Many thanks to Leo and his family, the publishers and Love Books Group Tours for giving me the opportunity to read and review such a special book.

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Leo and the Lightning Dragons

Leo is a knight, probably the bravest knight, and he fights dragons.  But the dragons that Leo fights are not normal everyday dragons, they are huge, lightning dragons inside his head.  Everyone around Leo tries to help, but they can’t tell when the dragons might strike or for how long.  The people of the kingdom and Leo’s parents all think this is so unfair and they try all sorts of special actions to help destroy the dragons, but Leo doesn’t seem to be strong enough to shake them off.  But one day Leo becomes very angry and decides to fight as hard as he can, making him the bravest knight in the land.

This is a wonderful children’s book written with love and personal experience, and is beautifully illustrated by Gilli B.  I am an adult who is able to understand the analogies cleverly used by Leo’s mother to describe the seizures that her little boy fights on a daily basis.  The lightning dragons inside his head depict so well epileptic seizures, and I can feel the frustration that the potions from witches, the music from minstrels and the special food from the wizard can do nothing to help – so often medics are unable to find suitable treatments for chronic illnesses whether this be medication, complimentary therapies or special diets.

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But what of the child reading this book?  It is perfect to become a favourite bedtime story for the early years, with its pictures of knights, dragons, witches, wizards, kings and queens.

But it is also perfect for an adult to introduce to a healthy child the idea that some people have different battles and these are against things inside their own bodies.  This need not be done in a scary way and indeed it isn’t in the book, as Leo the knight shows just how someone can battle with their own demons….or dragons in this case.

Leo’s mum also suggests ways at the end of the book to make this a “sensory” story and really bring to life the battles – wonderful and inclusive for all young children, including those with additional needs.  What child wouldn’t love using foil to make crackling, lightning sounds, slime to be witches potion or blowing bubbles from the cauldron? And we are told not to forget the cuddles!  Find more ideas on the website.

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The royalties for the book are being donated to the Childrens Hospices Across Scotland, who continue to support Leo and his family and many others like them.

Leo’s mum says “Every day, my husband and I are amazed by Leo’s sheer determination and refusal to give up and we could not be more proud of our boy, the bravest knight we’ve ever seen.”

This is a lovely book that brought tears to my eyes, but will bring hours of fun to so many children.  On Valentine’s Day what could be better than this beautiful love letter from parents to their brave little boy – a true knight!

5 Stars for both the story and the illustrations

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Buy here:

Amazon:

Waterstones

Find on Twitter:

@FledglingPress

@leolightdragons 

Website: http://www.leoandthelightningdragons.com/

About the Book and Author

Leo and Mum

“Gill wrote the story before Leo’s first birthday. It was a difficult time and Leo was having huge numbers of seizures every day. Feeling that Leo deserved a happier story, one in which his strength and bravery was rewarded, Gill wrote one for him.

She approached Gilli B, a Fife based artist, after seeing her artwork online and loving her whimsical and quirky style. Although she was only originally commissioned to do a few illustrations, she actually loved the story so much she asked to illustrate the whole thing and Leo got his own ’book’ for his birthday!

The following year, Gill had packed his book for a visit to the CHAS Hospice Rachel House and came back one day to find that the nursing staff had read it and written the most amazing comments inside.

Bolstered by their enthusiasm, Gill approached Edinburgh author Peter Burnett for some advice on how to get the book published. He took the book to Clare Cain at Fledgling Press, who fortunately loved the book. Fledgling Press do not normally publish children’s books but made an exception in this case, to help raise awareness of Ohtahara Syndrome and CHAS – Children’s Hospices Across Scotland.”

Taken from the website

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Monday Magic – Inspiring Blogs for You!

This is the week of love with Valentine’s Day fast approaching – red hearts, champagne, velvet wrapped boxes of chocolates and of course red roses.  The shops are adorned and the internet is overflowing with suggestions of how to spoil your loved one.  The thing that I would just love for myself is a week of sleep.  Forget being wined and dined, fancy foil balloons or expensive flowers…..the secret to unlocking my heart is to give me sleep!!

Valentine Monday Magic

Seriously I need to find some self love this week after a week of sleep deprivation.  I never sleep brilliantly, but this week has felt like working night shifts again.  I no longer panic in the night, but read from a dimly lit kindle or listen to dramas on the BBC radio iplayer or play soothing sleep mixes on Youtube.  The problem comes half way through the next day when jet lag hits and after 3 sleepless nights this week it has well and truly hit!!  Thursday night was one of these nights, but I didn’t drop off to sleep until Friday afternoon.  By the time hubby woke me at nearly 7pm it was time to go out to play…..a takeaway with some close neighbours.  Curry for breakfast – can’t remember the last time I did the equivalent!  We had been tasked with taking liqueurs and wine – easy.  Unpacking the bag when we arrived we had red wine, white wine, limoncello, espresso liqueur, coffee cream, sambucca, oxynorm……what???  Oh no, don’t panic, just a little something for Claire and her pain!

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Something that did cheer me up this week was reading that chocolate shaped as hearts is calorie free…well, who knew?  This is something that I am totally believing for the whole week, so come on hubby remember how the lovely girl and I have always woken up to a chocolate heart on February 14th?  I promise never  to say again that snoring from the other side of the bed requires noise cancelling headphones!

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Photo by Vlad Bagacian on Pexels.com

 

I haven’t given you a list of lovey, dovey red heart posts, but rather a diverse selection of blog posts.  They range from the breakfast pizza, to giving empowering compliments to girls to random acts of kindness.  My favourite has to be the slow cooker fudge brownies – there is a situation where the stomach rules the heart.  So sit back with a cuppa, or maybe a glass of something bubbly and enjoy some great blog posts.

 

https://www.theworldseesnormal.com/the-world-sees-normal/10-things-to-remember/

https://www.samsplaces.com/2019/02/bacon-egg-cheese-breakfast-pizza-recipe.html

https://justmuddlingthroughlife.co.uk/2019/02/08/10-tips-help-ease-stress-children-being-mum/

https://sweatpantsandcoffee.com/empowering-compliments-girls/

https://catchyourbreath60.com/february-is-heart-month-copd-and-heart-failure/

https://passionfruitpawsandpeonies.com/9-books-for-a-more-positive-2019/

https://lifeattheintersection.com/2019/02/11/practice-for-random-acts-of-kindness-day/

https://esmesalon.com/how-to-actually-chill-so-you-dont-burnout/

http://www.looneyforfood.com/slow-cooker-fudge-brownies/

https://www.unboundroots.com/my-heart/

 

Please share, like and comment to show how much you appreciate these bloggers!

Have a great week,

Claire x

 

Monday Magic – Inspiring Blogs for You! #Valentine’sDay

Love is in the air…..well it is Valentine’s Day this week anyway, and I hope that love is in the air for you, whether it be romantic or otherwise.  February 14th has never been a huge deal in our house – I don’t think Dad has ever sent Mum a card let alone flowers.  I have had flowers and cards over the years…and the occasional meal out – but I think after a particularly memorable night, crammed between 2 other couples in a Chinese restaurant and listening to their conversations as we couldn’t hear each other, the consensus was better to stay at home. OLYMPUS DIGITAL CAMERA We might have passed this on to our kids having just mentioned it to one son, who looked at me as if I was mad even mentioning doing something to mark the day.  Funny thing is we are going out this year – hubby is taking me to a live RSC streaming of Twelfth Night….might even get a McDonalds out of it if I play my cards right (are they gluten free I wonder?!).

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So fingers crossed the current flare of POTS symptoms have passed by Wednesday otherwise he will be taking his daughter or mother in law!!  Talking of POTS – that is postural orthostatic tachycardia syndrome, not the cooking variety – I saw the online community working at its best over the weekend.  A member of a POTS group put up a very distressed post that signalled an intentional overdose of drugs was being taken – the members of the group went into overdrive to find out where this person lived in the world, making contact with personal friends to check on them, calling on Facebook to help via the reporting suicidal thoughts, and sending message after message of support and hope.  I am so pleased to report that a message was posted last night saying that a stranger had called an ambulance, and the POTSIE was safely in hospital being assessed and truly appreciating all the good wishes.  No trolls, no nasty comments – social media at its best!nope

Yours truly has been sitting watching the winter Olympics and gasping out loud.  The wind!! How are those snowboarders doing it?  I have found the ice dancing particularly inspiring – it took me back to being about 8 and reading the Noel Streatfield novel White Boots.  That book changed my life and I was going to be an ice skater!!  Dad took me to Streatham ice rink in south London, I put one foot on the ice expecting to glide away – and, you guessed it, my derriere met with a very cold, wet landing.  Bang went that dream.  But some of those Olympians are inspirational – the young Russian girls literally float over the ice with such ethereal beauty, and the Canadian pair are just something else.  A human body really shouldn’t be able to do that!! (My bendy  friends will recognise this sentence!).

From inspirational athletes to inspirational blog posts!  This week I have added in some posts for Valentine’s – they are alternating with the normal mix of fab posts from some old  pals and some new friends – some spoonies, others not!  So sit back and relax with some great Monday Magic blog posts!

https://shailajav.com/how-it-all-began-15-years-ago/

https://legallyblindbagged.wordpress.com/2018/02/09/night-to-shine-my-two-cents/

http://thedestinydive.com/2018/02/05/valentines-day-date-ideas-that-dont-include-a-restaurant/

https://ginlemonade.com/2018/02/05/anxiety-us/

https://thimbleandtwig.com/crafts/make-rose-petal-bath-bombs/

http://penny-pennystreasures.blogspot.co.uk/2018/02/no-matter-how-long-winter-spring-is.html

https://www.tasteofhome.com/recipes/sweetheart-coconut-cookies

https://theinvisiblef.com/2018/02/12/overcomers-louise-webb-healing-body-turning-illness-something-positive/

http://suzyhomemaker.co.uk/valentines-day-decor-2017/

http://www.abalancedbelly.co.uk/need-talk-fistulas/

http://www.todayifoundout.com/index.php/2015/02/bloody-sexy-drunk-origin-valentines-day/

https://melissavsfibromyalgia.com/2018/02/08/move-every-day-and-some-neck-and-back-pain-yoga-links/

https://www.elitedaily.com/p/i-cant-afford-a-valentines-day-gift-so-instead-im-planning-adorable-surprise-for-my-so-8138638

http://ladyjaney.co.uk/5-blogging-goals-2018-dares-wins/

http://www.myrecipes.com/extracrispy/valentines-day-blood-orange-cocktail

https://bettysib1998.wixsite.com/young-sick-invisible/single-post/2018/02/05/f

http://www.lifehack.org/524580/100-quotes-about-love

https://dinosaursdonkeysandms.com/2018/02/06/dizzycast-ep-3-a-disclosing-dizzy/

https://laurenconrad.com/blog/2018/02/friday-favorites-275/

http://mummyitsok.com/blog/what-is-postnatal-depression/

Really share the love this week and share these posts, comment and make a blogger’s day!

Have a lovely week,

Claire x

 

 

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