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Sunday 12 July 2015

I'VE DONE IT, I'VE DONE IT, I'VE DONE IT!

The other day I sat looking at the manuscript for a book I spent ages writing but had just thrown aside in despair. The only publishers who were interested in it were either "dodgy" or wanted me to pay half the costs involved. Being a one income family, I could not justify spending the money to get my book published, even though I really wished I could, so I could have a hard copy and something to show for recent hard times.

If it were not for Ciara taking me to task ,I would never have finished the book in the first place and nor would I have sent it out to publishers. But I did and with no success on the publishing front, simply gave up. That is till this week when I remembered that "giving up" is not in my nature.


Suddenly the other day I thought, I can't afford to publish a hard copy but there is nothing stopping me publishing a digital copy. And thanks to #Amazon,  that's what I have done. It was a huge challenge and it took me about ten shots before I was pleased with the final upload. But I've done it. It's on Amazon for pre-order and will be released on Mark's birthday (31st August) OR when I have 100 pre-orders (what ever comes first!).

Now all I need is your support. Its not about the money otherwise it would be more than $2.99 USD and $4 AUD. What is driving me is the ability to advocate for those with Cowden's syndrome, a rare disease which both my daughter and I have and one which precious few people know about.

Having a rare disease brings significant challenges and God knows, the last two years especially have thrown them all at me. It's hard when doctors haven't heard of what you have, don't know how to treat you and sit back in disbelief when you are back with something new in a short time. It's hard holding down a job, paying bills and making ending meet. It's hard waiting for a time bomb to potentially explode.

But despite all this, most people I have encountered with Cowden's syndrome are as Australians say "real troopers". They are tough men, women and children and it is only fair and right I don't give up and give this a go.

IF YOU WISH TO PRE-ORDER A COPY, HERE IS THE LINK:


AND HERE IS THE BLURB THAT GOES WITH BOOK:

 I am an Australian wife, mother and teacher and I have Cowden's syndrome. This is a rare genetic condition which effects 1 in 200 000. Cowden's syndrome is caused by a damaged gene which usually controls cell growth. As the gene is faulty I grow tumours ( lumps) all the time and am at a higher risk than most for cancer. This is why my blog on social media is called " Chronicles of a Lumpy person". Writing the blog has helped me cope by sharing my story and the challenges I have faced in my life.
In 2013 another story unexpectedly unfolded when my daughter was diagnosed with a life threatening medical condition of her own. So far she has required 15 major procedures (including two craniotomies) in her brain. It is highly likely I have passed on the defective gene to her.

Dealing with my own condition is very hard but watching your child go through her own hell is heart breaking. I never imagined my story would unfold in this way and unfortunately we haven't seen the end yet.

I'm not a famous author, nor am I an expert in editing. I'm just a Mum on a journey to advocate for a very rare condition. Together with my daughter, I'm also on a mission to show that " giving up" gets you nowhere


 Till next time...xxx















9 comments:

  1. congratulations..
    I have anylising spondilities. hardly anyone in India has heard about it. I always find difficulty in explaining people the condition I am in.
    its good to see you succeed.

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    Replies
    1. I feel and understand your pain. Thank you for taking the time to comment.

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  2. Congratulations! How exciting to get something like this done. I've shared on Facebook, Twitter, and Google+. Thank you for sharing your excitement with us at the #AnythingGoes Link Party.

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    Replies
    1. I'm indebted to all your sharing this morning. I'm excited to have found my way of advocating for this condition and for others like myself and my daughter!

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  3. Congratulations. What an achievement.

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    Replies
    1. I love your blog! Thanks for the congrats. Feeling a tad proud to be able to advocate for those with CS. It's all a bit exciting x

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  4. Well done on not giving up! I'll definitely check out your book! Thanks for sharing #TwinklyTuesday

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  5. Congratulations! I wish you huge success with your book and more generally spreading awareness. Now *I* know, and I'm one more person! Thanks for linking with #TwinklyTuesday.

    ReplyDelete

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