The Enrico Charles Humanitarian Organisation (E-C.H.O) Literary and Music Awards have been brought about as a result of my personal experiences as a mother 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 occasional daytime treatment, requiring constant physiotherapy, physical assistance and enteralfeeding via a gastrostomy tube.
The doctors told me he would not live to experience his first birthday, but Enrico’s extraordinary spirit, humour and affability made me strong and believing. I travelled the world with him in search of doctors and specialists, and his amazingly 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 death would mean something. I resolved 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.
There are fifty million people with disabilities in Europe and according to World Health Organisation statistics, over six hundred million people with disabilities around the world. This is now a time when information and perceptions of disability, especially after the Paralympics, need to be further developed and it is essential for all human beings to work together even more, disabled or otherwise.
When my son died, I felt it was my duty to improve awareness of disability around the world.
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, training nearly 200 health care professionals in a groundbreaking non-invasive respiratory management program developed by Professor John R Bach from the University of Medicine and Dentistry, New Jersey (one of the medical professionals who took care of the late Christopher Reeves).
After my son’s death I redeveloped a plan. I began in Paris with the Children’s Hospital and put it to practice inDubai. I began to attract interest in my work from globally recognised professors and hospitals as well as otherrelated organisations, and I started to realise that the problem was not in fact a lack of resources, but lack ofinformation availability of some conditions.
This lack was evident to not only the patients but even the healthcarepractitioners themselves. What was needed was a driver for the information to be delivered.
Only the internet, newspapers, magazines, television and radio have the power to make the difference.
The E-C.H.O awards will promote the human factor in all areas, with success stories as tools of inspiration to make successes of their own lives, as well as improving knowledge of those who are unaware of the issues that
people with a disability face.
Summary
The E-C.H.O Awards are presenting in two categories Music and Literature and will be presented in October 2013 topromote. Judges will be selected from the fields of Literature and Music.
In 2014 it is hoped to include a categoryfor best actor. To be held in October Half Term.The Award will be publicized via Doctors surgeries, Hospitals, Hospices, WI groups, Church groups and localhostelries in villages and towns throughout the UK, initially starting in Ludlow and the Shropshire region.
The aim is to reach people via friends and families in and out of the classic medical and care sector to be aware of the award.
By having the awareness in local hostelries as an example, the aim will be to set up monthly speak easies where people can share their stories which will not only raise awareness of the award but bring together people in the community to accept that disability, no matter how great or minor, is not an issue or a matter to be wary of.
These monthly speakeasies will begin to break down barriers of isolation particularly in small communities.
During 2013 an online magazine will be developed and launched which reaches out internationally starting within the UK eventually incorporating Italy where the awards are based. A magazine has been chosen for two reasons.
1.It will serve as a platform for people to write stories that can go towards entries in the competition.
2. To advertise products and services that might not otherwise be made available to people in their towns and villages, other than that which is offered by their medical services. Many times products and services are difficult to find even in the age of the world wide web, or not known about, that might be more appropriate to a user or person in need.
Benefits of the magazine:
Providing employment and voluntary experience in creating a magazine to people who are at home who might otherwise not have work or a creative outlet.
Linking people, organizations and services to people internationally to help in the efforts to break barriers of
isolation.
Objectives
History
The Enrico Charles Humanitarian Organisation (E-C.H.O) Award has already been successfully running since 2010 in the UK which was administered by a large Literary Festival. We are now be developing this award independently.
In late 2010 a fundraising awareness event took place in Worcestershire where interest proved its need.
The Founder has already published an e-book endorsed by some of the top medical Professionals in the USA and
the UK. These professional have known the founder for over a decade and lend their support, recognizing the
importance and significance of this book which will help people with Spinal Muscualr Atrophy, as well as people
with Neuro Muscular disease.
In 2012 a promotional concert took place in the Rome region to promote the launch of the award in Italy with awell known European Opera singer who is the Italian Patroness. A successful Italian wheelchair manufacturer isnow a spokesperson for the Italian award and a recognized respiratory professor will be a part of the committee.
‘’This is not just an award: it is about the efforts of writers, actors, musicians being able to communicate withhundreds maybe thousands of people who still remain without advice or assistance, people living next door who remain anonymous and many times isolated and alone…. This does not need to be the case any more.
The internet, Newspapers, books, radio, magazines and articles circulate in surgeries, churches, waiting rooms, train stations and airports and communicate to people who may know someone who has or is someone with a
disability and who can be recognized for their bravery talent and determination, a person who could inspire
someone else on a similar journey.
After 13 years on this journey, we are ALL the same, that is what this award is about’’ ….. Charlotte Wingfield
