One Million Project Magazine
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Geraldine Renton<br />
Often Vs Never<br />
What is Hunter Syndrome?<br />
Hunter syndrome is a rare genetic, life limiting<br />
illness. An enzyme which helps break down<br />
waste material in the body, is missing or in milder<br />
cases of the syndrome, this enzyme is partially<br />
missing.<br />
Because this tiny enzyme is damaged or missing,<br />
the waste materials build up in the body , as<br />
there is no other place for this waste to go but<br />
to stay in the body, slowly building up over time.<br />
This build-up of waste causes damage to every<br />
single part of the body and brain; every single<br />
part of the body- from fingers right to hair!<br />
This syndrome normally affects boys only but<br />
there are two girls in the world with the syndrome.<br />
It is genetic and normally passed from<br />
mother to son; but often it can occur in the<br />
womb with no family history.<br />
There are roughly 2000 boys worldwide living<br />
with the syndrome.<br />
With severe cases; these boys tend to die during<br />
their teenage years.<br />
Each child is given Enzyme Replacement<br />
therapy (ERT) once a week, with the hope<br />
of slowing the progression of the syndrome<br />
down; in layman's terms this treatment<br />
buys families, like mine, time.<br />
What does life limiting mean?<br />
Life limiting is a nicer way to say terminal,<br />
when referring to Hunter Syndrome. It is a<br />
progressive syndrome, which means the<br />
boy who once learned to walk, talk, cycle,<br />
use the toilet, feed himself will lose all<br />
those skills in time.<br />
Why do you write about Hunter<br />
Syndrome?<br />
For awareness. When my son was diagnosed<br />
there was nothing out on the internet<br />
only medical journals telling me my<br />
son was dying. I wanted to show the world<br />
and more importantly, newly diagnosed<br />
families with any special needs; that there<br />
is a life to be lived with my son, that it is<br />
not always sad. I wanted people to understand<br />
our life and to therefore understand<br />
on some level , what it is like to be that<br />
parent of the child with special needs.<br />
I write for me. I write so I can look back<br />
and remembering the good, bad, sad, funny<br />
life we have with Ethan.<br />
Copyright © 2016 by OMP <strong>Magazine</strong> Publishing
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