Press

Expat Interviews::

Interviews with people (expats) living overseas and abroad!

My Story starts with having a child and my travels have been mostly due to him. Ten years ago I had a child who was born with SMA Type 1. He was diagnosed from 5 months and we were told that he would probably die sometime around 9 months maybe 12 or the maximum of 18 months. It was at this point that my moments of expat living started and I went to Switzerland and then to the USA in search of a cure. When I went there I eventually found what I needed to keep my son not a cure but a methodology that would keep him alive. I was one of the first mothers to travel to the US from the UK, with a child with this condition.

I took up residence in 1999 for six months. I chanced upon John R Bach, M.D., Professor of Physical Medicine and Rehabilitation and Vice Chairman, Department of Physical Medicine and Rehabilitation at the University of Medicine & Dentistry of New Jersey. Professor Bach is an international spear header of a ground breaking, non-invasive respiratory muscle management methodology that aims to prevent and reverse - where possible - invasive respiratory interventions; Professor Bach also has a specialist knowledge of the Werdnig Hoffman condition, allowing myself to hope for the miracle to keep Enrico alive.

Having spent two and a half months under Prof. Bach’s tuition, I returned to the UK with a respiratory machine called the Mechanical In-Exsufflator (M I-E) or ‘coughalator’ as it is more widely known; this was co-developed by Dr Bach in conjunction with Emmerson who manufactured the original iron lung. I trained and became a non-qualified expert amongst a selection of medically qualified experts around the world. I then moved to Paris as family had moved there. It was here that I learned all about all the problems of really moving abroad with a child with health problems.

It started with problem with the understanding how the E111 worked or sadly how it didn’t, the health-care system was something quite exceptional and I learned some very tough lessons about home nursing and obtaining special feeds, physio, the problems with the Hospitals and how they operate, or don’t, sadly with their employment laws. All of these lessons contributed to an enormous learning curve. I had thought that with several research trips there to organize hospitals in advance it would be a walk in the park. In the end I learned the hard way about some of the problems that face people, expats living abroad.

Sadly my son died after slipping into a coma after an incident for four and a half months and I was left to nurse him with only a couple of nurses to help and he then died in my arms back in hospital at the very end. I had experienced hospices in the UK and from the time my son died I just knew that I didn’t want any other mother, family or child to go through what I went through. Because I had had so many unique experiences (traveling with a quadriplegic child in cars planes, finding ways to feed with clinical hygiene in cars and planes and airports, finding nurses, searching for oxygen and finding ways to travel with oxygen cans for the car, looking at generators that will help with the ventilator and suction machines whilst in transit – truly almost impossible, packing up all the feeding tubes bottles ambubag and suction equipment organizing teams of nurses in different countries, learning the language !!! and of course not forgetting all the baby stuff to make sure that the little man had no idea of what was happening and ensure he would have a good time during the journey) that only few parents even of sick children experience. I knew something had to be done.

By this time I had initiated two clinical trials and have educated nearly 150 health-care professionals in the UK and in Paris, where Enrico died after being comatose for 4 months and where I formulated a plan with the hospital directors to establish a hospice in Paris for disabled sufferers. Enrico’s extraordinary spirit, bravery and humor captured hearts and minds alike in London, Paris and New York. His ability not to make dramas out of multiple crises inspired me to confer meaning on his short life and to embark on a mission to honor his memory.

It was during this period that I became painfully aware of the lack of crucial information available to the disabled and their carers: I had to cremate my son in Paris, for example, as I had been ill-advised that Enrico’s body could not be flown home. It was shocking revelations such as this that inspired me to put the knowledge I had so painfully acquired to the service of others.This mission led me to doing a global research on non-governmental charities in many countries of the world and a campaign to reduce the global stigma and social marginalization that the world of disability generates. I began to assiduously research, for example, palliative care options in Dubai and, from the empirical research gained from this experience, I began to put together a project that planned to open care centres around the world. In this process, I attracted considerable interest and support from myriad and eminent medical practitioners, hospitals, international organizations and charities before drawing the conclusion: the media – newspapers, magazines television and, increasingly, the internet were best placed to make the difference to disseminating information to help the disabled.

This realization lies at the heart of my new campaign to launch a new type of literary award in the name of my son, The Enrico Charles Literary Award, to be launched later this year, to encourage media representatives to promote better understanding and awareness to the community about disability to ensure that no one should suffer the same depths of despair that I has had to endure There are fifty million disabled people in Europe and according to World Health Organization statistics, over six hundred million disabled people around the world. This is now a time when information and perceptions of disability should be changed, and it is essential for all human beings to work together, disabled or otherwise.

When my son died, I felt it was my duty to improve awareness of disability around the world. As anyone who has the misfortune to have, or know someone close with a disability will know, the path to finding the right information about the condition can become as stressful as the problem itself. When I was going through this traumatic time, I felt isolated and alone. All the information that was available to me was so clinical and did not have any meaning to me, or my son, and I could not bring myself to talk to faceless charities or help groups because I could not believe that they would really understand how I was feeling. There was a missing human factor.

I now have set this Literary Award up and am about to start a launch in the public forums, the plan is to eventually take it global somehow!!

About SMA Spinal Muscular Atrophy: From infancy, children such as Enrico are dependent on respiratory support. Because of their need to receive all nutrition via a stomach tube (gastrostomy), they require 24/7 palliative care, assistance and surveillance. From the time of his birth on the 29th March 1998 to his tragic death on the 2nd December 2002, I provided Enrico with the specialized, dedicated and loving care that he needed, contributing materially to an extension of his life beyond all conceivable expectations.

Type 1 is more often referred to as a terminal condition normal prognoses (90% of children with SMA have a life expectancy of less than one year and nearly 100% do not survive their second birthday). This rendered him quadriplegic, requiring constant night-time ventilator support, with occasional daytime treatment, requiring constant physiotherapy, physical assistance and enteral-feeding via a gastrostomy tube.

I hope that my story might help others in some of their journeys. There may be a radio show coming shortly and there is even now a great level of interest just in the last week since my small team of supporters have started to put this out. A book is also being planned at some point but I am busy now getting this off the ground to serve the purpose to get journalists and writers to do what needs to be done to help others. Queries are more than welcome, as this is intended to be international, communication is what this is all about.

Charlotte Wingfield