Enrico Charles Literary Award

United Kingdom 2013

The Enrico Charles Literary Award has been brought about as a result of my personal experiences as amother of an extraordinary child born with the neuro-muscular condition SMA [Spinal Muscular Atrophy]Type 1 otherwise known as Werdnig Hoffman disease.

Type 1 is more often referred to as a terminal condition.

This rendered him quadriplegic, requiring constant night time ventilator support, with occasionaldaytime treatment, requiring constant physiotherapy, physical assistance and enteral-feeding via agastrostomy tube. The doctors told me he would not live to experience his first birthday

I have just published an E-book published on KINDLE – AMAZON three internationally known Professors from the United Kingdom and the United States have written a forward for my book, all specialists of genetic, rare neuro-muscular, and respiratory conditions. In this book I have written the story of life with my son with photo’s and information how we lived and managed his condition. In the first week after publication, a mother contacted me and told me that the book helped her understand how to treat her daughter. The Doctors did not know anything about the disease.

Facts: Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing. SMA is one of the most prevalent genetic disorders. One in every 6,000 babies is born with SMA. SMA can strike anyone of any age, race or gender. One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.

E N R I C O C H A R L E S

‘I travelled the to Switzerland, the U.S.A, and tow locations in France, with him in search of doctors and specialists.

His amazing bright and loveable personality captured hearts and minds alike, from London to New York and Paris.

Regardless of the crises that beset him, he remained so content and cheerful, and this convinced me that his life and later his death would mean something.

While Enrico was still alive I initiated two clinical trials in the UK and began to put together a project for a palliative care hospice in Paris, I trained nearly 200 health care professionals in both the UK and France in a groundbreaking non-invasive respiratory management program developed by Professor John R Bach from the UMDNJ Medical University, New Jersey (he was one of the medical professionals who took care of the late Christopher Reeves)

I resolved in 2002 that I would make it my mission to find a way to honour his memory and somehow put my experiences and knowledge to good use and help others ‘’

After years of failed attempts, in Paris, Dubai, London as well as lots of personal challenges that many time compromised any chance of success, I succeeded in setting up this award in 2010 to help others by people being ableto write their incredible stories that would help inspire others around the UK and eventually being shared internationally… Now this is award is beinglaunched this year in Italy for 2013.

Enrico Charles Literary Award Launch 16° September 2012 Castel Di Guido, Rome, Italy

With the President of the Association

Laura Ansaldi Well known European Opera singer

Enrico Charles’ Literary Award Patroness for Italy

Publicity that was put aroundRome City centre

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So far this award although small in its test phase hasalready attracted attention from people around the world.

With this award and the international european links itprovides a portal for new writers and others to connect in the near future, widening possibilities for people to read

stories that they can identify with stories that can inspireother’s and inform many with positivity, humour, and

provacative quirks that prove to us all the incredible human capacity for keeping alive.

There are fifty million disabled people in Europeand according to World Health Organisationstatistics, and over six hundred million people withdisabilities around the world.

This is now a time when information and perceptionsof disability should be changed, and it is essential forall human beings to work together, disabled orotherwise.

TODAY

The 4° UK Literary Award

Now Going Nationwide

The Enrico Charles Literary Award concept is to improve the missinghuman factor in mainstream media press coverage about disability,promoting positive understanding and awareness to people living withdisability, with success stories as tools of inspiration on their journey tomake success of their own lives, as well as improving knowledge of thosewho are unaware of the issues that people with a disabilty face.

We are working to take the Enrico Charles Literary AwardNational in 2013

• Do you have a story to tell?

• Do you know someone who has inspired your imagination?

• Someone who against all odds has achieved success despite being disabled?

• Are you interested in the launch of this unique literary prize to help change many lives and the perceptions of disability ?

If you answered yes, contact us ...

www.enricocharlesliteraryaward.com / www.ec-humanitarian.org Email: info@ec-humanitarian.org