This is the story of Leon
Today, I want to introduce a friend of mine. His name is Leon. Leon is a great
guy and Leon very much appreciates and enjoys life and he loves the Police, but
I’ll come to that later. He always smiles and he is always happy. That’s fantastic
you think and that’s how it should be. We all want to be happy, don’t we?
I first met Leon in 2001, when I was part of a start-up Health Service in
Germany. The health service was a pioneering venture- the first of its kind in
Germany- providing specialised Intensive Home Care Nursing services for longterm
mechanically ventilated Customers with Tracheostomy and their Families. I
am still, to this day, moved by the very fact that I was privileged to be involved
in Leon’s care.
Leon had a long and burdensome pre-medical history and it all started that he
was born with a rare degenerative neuromuscular disease, which sort of kept
him weak from an early age. He was able to walk and he was able to do most
things that other kids could do, however he was slightly smaller than his peers
and slightly weaker. That’s at least what his parents told me and also what I
have seen on pictures.
Leon also had an older brother Mark, who was healthy.
One day, while the Family was on holidays in Spain, Leon got hit by a car and
that’s when shit really hit the fan. Leon ended up with a Traumatic brain injury,
which would keep him mentally impaired for the rest of his life. He also ended up
with a spinal injury, keeping him wheelchair bound for the rest of his life. The
accident should also keep him in Intensive Care on a ventilator with a
Tracheostomy for years to come. Leon was very lucky to be alive of course, and
thanks to his parents, who never gave up fighting for him, he managed to
eventually go home on a ventilator with a Tracheostomy.
You may wonder how somebody could go home on a ventilator with a
Tracheostomy? I guess the answer to that would be, that after I got to know
Leon and his Family, his parents were very level headed and were initially able
to deal with the challenges of having a ‘mini ICU’ at home with no qualified staff,
just the equipment. The parents were basically putting their life on hold by
putting Leon first. His parents knew that he would have a limited life expectancy,
as due to his degenerative Neuromuscular disease he had a very weak heart and
he needed regular diuretics to keep him out of pulmonary oedema and they
knew that they wanted to make Leon’s life as enjoyable for him as it could
And here it helped that Leon was a very happy guy generally and that he was
easily entertained. He always smiled and even on the days were he didn’t feel
that great, he always had that smirk in his face were you knew he was on to
something. For about five years after the accident, Leon’s parents managed him
at home, but they also dealt with many setbacks and readmissions back to
Intensive Care for long periods of time.
Determined to get Leon back home, his parents were also determined not to let
Leon go back to ICU ever again, as they felt his spirit faded in the sterile clinical
So they managed to keep Leon at home on a ventilator for a few more years to
come, putting huge strains on the family life, but nothing was too much for
It was around the year 2000, when Leon’s family first heard about a nursing
service that was exclusively providing Intensive Home Care Nursing services for
long-term mechanically ventilated Customers with Tracheostomy! Leon’s parents
were making contact and we ended up taking 24/7 care for Leon in his home.
Health funding was arranged for Leon’s care and we were able to commence
specialist nursing services. Leon was already around 20 years of age at the time,
but was as little as a 5 year old and he had the mental capacity of an 8 year old.
We could see and feel that his parents, despite their level headedness, had been
using up all their energy and internal resources to keep Leon at home and
provide him with everything he needed. It put huge strains on the family life, as
having a child at home on a ventilator with Tracheostomy is risky and it involves
dealing with the unknown. But things were getting better from there. Leon’s
parents were now finally able to take a holiday and Leon was finally able to
enjoy life with different people who eventually became his friends.
We took Leon out and about, always having a ventilator and emergency equipment with us and
he loved going to the City on the train, he enjoyed eating ice cream and just
around the corner from his house was the local Police station and the crew there
knew and loved Leon. According to Leon’s parents he had a faible for the Police,
from an early age and he loved everything that had to do with the Police. He got
very excited every time he saw a Police car or when he heard the sirens. He
eventually became so popular with the local Police that they usually visited him
at his birthday with some presents and for a couple of years he managed to get
the attention of the local newspaper with pictures of him and the Police for his
Leon was generally very popular in the community where he lived, which was
due to his friendly and positive nature. The nursing service took great care of
him and always had activities scheduled for him so that for the last few years of
his life, he was certainly able to make the most of it.
Leon’s story eventually drew the attention of a big TV station and together with
Leon’s parents a documentary was made about his life and his life story, and
more so about his fight for life and what it meant for the parents initially to take
him home on a ventilator.
Leon was certainly blessed in the sense that he had great parents who loved him
unconditionally despite his major impairments and nothing was too much for
anyone involved in Leon’s care. But Leon was a genuinely great guy who just
enjoyed life, despite his limitations and I know that everybody involved in his
care was touched by his story and made a huge difference to his and to his
It must have been around 2004 or 2005, after I had already left the nursing
service providing care for Leon, that his heart became weaker and weaker and
he was struggling to stay out of pulmonary oedema. The nursing service and the
parents thought that it would be in his best interest to let nature take its course
and not readmit him back to Intensive Care- the environment Leon did not want
to go to anyway. Leon eventually passed away in his own home with his parents
and his brother by his side.
Leon was an extraordinary character and he was full of life, he had a lot of
strength and most of all, he lived his short life to the fullest, despite his
limitations and setbacks.
Patrik Hutzel, Critical Care Nurse, August 2012
Copyright 2012, INTENSIVE CARE AT HOME™ Pty. Ltd, all rights reserved