One Million Project Magazine

Do you write about anything
other than Ethan?
Absolutely ! I love to write. I write poetry. I
write about my Irish childhood and I have
written a few short fictional stories.
Does your government help you
with the life you have to live?
That's a difficult question. Yes and No.
Ethan needs care 24/7 and as he ages his
needs will become more intense. I gave up
my job to be Ethan's carer. The government
pays me a small wage but have been
cutting it for years. Now, when it comes to
the ‘budget’ of our small island. Carers like
me can’t protest so we are easy targets
when it comes to taking financial help
away from a group of people.
We fight for everything Ethan needs such
as therapies, medical help, medical equipment
and schooling. Ethan has a medical
card, which covers almost all his medical
expenses, which I am eternally grateful for
as the ERT- Ethan receives currently, is the
second most expensive drug in the world.
What could the government do,
to make your life and that of
Ethan's a little bit easier?
They could roll out a plan for Carers like
me, who are still quiet young and know
that their days of being a career will end
faster than most; due to the fact that their
child has a terminal condition. They could
reduce the amount of letters they demand
when apply for help with the financially
side of Ethan's care; it is soul destroying
having to ask for a letter over and over
stating that your child is dying.
How old is Ethan, tell me about
him?
Ethan is 14. He is funny, caring and very
charming. His favourite thing to do currently
(as this changes due to the progression
of his syndrome and his level of understanding)
is flick switches while dancing
to ‘Mickey Mouse clubhouse’ theme
tune...it is a talent! Ethan loves to be loved
and gives love so freely. He is innocent and
always will be. Ethan can make you laugh
without even trying to; once he laughs
even the coldest heart would find it hard
not to laugh along with him, he is the definition
of a child with an infectious hearty
laugh. It is the most beautiful sound in my
world.
What are your hopes and dreams?
That's a hard one. On a personal level, I
hope one day soon, that a cure for all MPS
and related disease can be found. I hope to
see Ethan become an adult. I hope his
brothers get to have some more quality
time with him and us, so we have the opportunity
to make some great memories.
I hope all my boys know that I love them
equally.
On a more professional level, I hope to
write a book or two! My dream is to become
a published writer who people enjoy
reading.
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