It is every parent's nightmare to lose a son or daughter,
whatever age they may be; particularly when it is to an illness or disease for which
there is no treatment or cure.
I lost my son Jason in April 2011 to a mitochondrial
disease. It all began 12 months prior, when he was admitted to hospital
following an epileptic seizure, brought on, it was thought, by a stroke which
affected his speech, movement and thought processing.
Some weeks later he was diagnosed with 'Mitochondrial encephalomyopathy, lactic acidosis, and
stroke-like episodes', MELAS for short - one of many mitochondrial
conditions. The 'stroke-like episode' he suffered was the result of lactic acid
The news was a bombshell to us all, but Jason and his
fiancée were devastated and had many tearful moments, wondering if they had a
future and how they would cope.
Jason worked extremely hard over the next six months and he
was well enough to return to work. Sadly, a few weeks later, he suffered another
mild attack, which caused him to cease work again. As it turned out, he didn't
In January 2011, Jason had another massive attack and was
readmitted to hospital with a total loss of sight. Over the next three months
he deteriorated further, due to his brain being under constant attack from the
effects of excess lactic acid, until his death.
His suffering during this period was horrendous, with stages
of hallucinations and total confusion. It was unbearable to watch, especially
as we struggled to understand what he was suffering and what we could do to
help him. Even now I keep replaying these events in my mind. Could I have done
more? It is a hopeless situation and the guilt stays with you. He is a
permanent fixture in my thoughts.
Jason was an intelligent and successful person: a science
graduate, a senior manager in his work, with a great passion for travel, and he was
engaged to be married. It was incredible how much he packed into his short
life, for he was only 40 years old. Did he know something?
Jason's mother died in 1998 from a 'stroke' - it's now
obvious that she also died from MELAS. She suffered for eight long years. At
the end she could not walk, talk, swallow or hear. This is how cruel and
hideous mitochondrial disease is.
Jason and his mother were among the unlucky (one-per-6,500) people
who have severe mitochondrial damage. This ratio means that mitochondrial
disease is described as rare. So in an average UK town with a population of
330,000 this equates to 50 severe cases. But as many as one in 200 people are
affected to a lesser degree. This equates to 1,600 people in a typical town - not
rare at all, then.
Prevention is better than cure and less costly in the long
run. I strongly support development and adoption of mitochondrial donation as it
gives affected families their only hope of stopping these hideous diseases permanently.
Ethically, I think it's the right thing to do. I have great
difficulty understanding those who are opposed to the technique. Of course they
are entitled to their beliefs and can choose not to adopt this technology for
their own families. But they must not prevent others benefitting from this
fantastic breakthrough when there is no viable treatment alternative.
I can only assume that some of those who object to mitochondrial
donation are simply misunderstanding the technical aspects; there have been
references to 'cloning', 'designer babies' and 'three-parent babies' in the
media - references which are inaccurate, misleading or unhelpful. Others may be
blindly following their own religious doctrine.
There is always a risk of complications with any
new technique, but the risk seems small compared to what will happen should we refuse
the technology. I am sure most affected families will accept the risk of the
new as one worth taking. The alternative is like living on death row, waiting
for the inevitable. We must be brave and lead the world; future generations are
depending on us!