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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Photo by Snapwire on Pexels.com

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

red heart drawed white printer paper on pink surface

Photo by rawpixel.com on Pexels.com

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!

Welcome back, friends – I have been on an unintentional blog break for two weeks.  Unintentional as life, fatigue and brainfog took over – I just was unable to put pen to paper or fingers to keyboard.  Then there are the constant demands of a family – hubby, dogs and “big” kids.

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Monday Magic Inspiring Blogs for You! 12.11.18

The biggest kid, the young tech engineer, continues to spend half his week working from home, the other half in London as he and a tech pal continue to grow their new IT start up.  He just spent the weekend in the Peak District walking with 9 nine others through the mud and rain – a good time was had by all.  The smallest kid, the lovely girl, is currently working her way through German TV dramas on Netflix for her A level German “wider experience” – this weekend it has been Deutschland 83.  I saw it on TV but have been happy to watch again as the soundtrack takes me back to my teens in the 80s – the plot is great too!

Hubby managed a visit to the politics student last week.  It was supposed to be an overnight stay to break a long journey there and back to the north of England – and could well have included a pub crawl of Nottingham.  Hubby took the middle kid out for dinner and in true student style he ate everything put in front of him, but when they arrived back at the “digs” the number of young people staying in the house had grown to the point where hubby didn’t fancy his chances of 1. sleeping and 2. getting anywhere near the bathroom.  He was very relieved to be climbing into bed next to his wife at 1 am rather than in with his 19 year old son!

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What about the dogs?  Well our old dog has been on his holidays to grandparents the last two weekends, whilst we have been vizsla sitting….firstly for Chester and then for Jensen.  Sam is now back and in his favourite spot in the window asleep on his bed – at 16, he is probably well over 100 in human years so can be forgiven for turning up his nose when the back door is opened to a rain swept garden!

I haven’t been very active with blog reading or commenting, but I have found some lovely posts that I hope you will enjoy them!  Commemorations have taken place globally this weekend for both Remembrance Day and the 100 years since the end of the first World War,  so it seems fitting to share some posts to mark this.  So sit back, grab a cuppa and have a good read….

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https://willowdot21.wordpress.com/2018/11/06/the-red-the-white-and-the-purple/

https://thepurplealmond.com/2018/11/12/a-tribute-to-our-veterans-1918-2018/

https://walkamyelinmyshoes.com/2018/11/11/i-remember/

https://gardner1015.wordpress.com/2018/11/12/daily-ramblings-motivation-monday-20/

https://inkanyiso.org/2018/11/06/2018-nov-6-loss/

https://jenanita01.com/2018/11/06/38821/

https://whatapain.co.uk/dear-diary-my-domestic-abuse-story/

https://chronicallyglutenfree.com/2018/11/gluten-free-thanksgiving-stuffing-dairy-soy-free/

https://zebrapit.com/2018/11/12/roasted-turkey-with-herb-butter-and-gravy/

https://writeintolife.com/2018/11/12/1000-days-1000-humans/

Have a great week,

Claire x

 

 

 

 

Monday Magic – Inspiring Blogs for You!

Good afternoon, PainPals!

Another week has flown by and here we are passing the Summer Equinox and arriving half way through the year.  The exams have finished in our house, with the lovely girl completing her GCSEs  last week and now we just sit and await the results.  The boys should both receive their results any day – one for his first year politics, the other for his full Masters in Engineering – is it awful to say that I am so glad it isn’t me!!  It really is bad enough being the parent-in-waiting.

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Monday Magic Inspiring Blogs for You! (25 June)

Hubby had a great week away with year 6 in Paris, with fantastic weather and an action packed timetable, including all the highest rides in Parc Asterix – apparently it has the highest and fastest rides in Europe! IMG_1716 My own week felt pretty action packed too as friends and family rallied round knowing hubby was missing my birthday – I have been wined and dined and spoilt rotten.  Incidentally it must mean something that National Martini Day fell on my birthday!! I have also watched more football than in the rest of my life – probably due to the politics student being home – and have become strangely entranced by the world Cup.  I still have no idea of the various rules for off side, free kicks, fouls etc, but reckon I’m doing well to just know the terms.  Yesterday I watched the whole England game surrounded by mainly young men at the games field of my old school – the actual event being a cricket match and BBQ. When the football draw was announced and we saw that an England match was on the day of our annual cricket match for Past versus Present, we knew that we had to screen the match.  Not the easiest thing to position a screen outside in bright sunshine where four cricket teams and guests would all be able to see it.  I have had dreams over the past week that the TV wouldn’t work and I feared it was premonition when I arrived to be told we didn’t have an aerial or a device to stream it – aghhhhh!!!

But all’s well that ends well as they say – with a small TV aerial, several gazebos and me directing the fit & healthy in erecting said gazebos, we achieved a picture that was watchable and created some shade as an added bonus.  So yours truly, as Chair of the “Past” pupils’ committee, parked her wheelchair up in prime position alongside the headmaster who declared that if we couldn’t pull rank to watch the football then when could we?!  I don’t need to tell you what the atmosphere was like as England scored 6 goals – something I don’t remember happening before!

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So my posts today have been chosen in a little haste – sofa day Saturday and then cricket Sunday – but I am sure that I still have ten top posts for you to enjoy!  If you are a parent with kids about to start the long summer holidays, do not miss the Chocolate slime post!! Turn off the phone, grab a cuppa and have a read…..

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National Martini Day! Photo by rawpixel.com on Pexels.com

https://foodimentary.com/2018/06/19/cheer-june-19th-is-national-martini-day/

http://www.spectrummum.com/2018/06/a-glimpse-into-our-autism-cure.html?m=1

https://www.abookloversadventures.com/best-summer-beach-reads-2018/

https://mummyhereandthere.co.uk/2018/06/21/sleep-tight/

https://cfswarrior.weebly.com/blog/for-my-lovely-boyfriend

https://schoolrunshop.com/edible-chocolate-slime-recipe/

https://bloggingastrid.com/2018/06/21/book-review-doctors-notes-by-rosemary-leonard/

https://www.sizzlingtowardssixty.com.au/over-50-thriving-guest-series-what-keeps-you-on-track-to-thrive/

http://www.momshomerun.com/2018/06/good-can-sometimes-come-from-bad.html

https://extradrymartini.com/2018/06/22/june/

Share some love and comment, like & share these posts!

Have a great week,

Claire x