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Julie with Carter and Tracy with Sam
outside Parliament. |
Muscular Dystrophy sufferers and their
parents
make their way through Parliament Square. |
ANOTHER
local couple have added their voice to the desperate cry for a
successful Muscular Dystrophy treatment after their toddler son
was found to be suffering from the invariably fatal disease.
Carter Dalzell (3) travelled with his parents
Julie and Noel from Dromara, to London last week to join a
parliamentary lobby involving a large number of sufferers and
their families. Its aim was to persuade MP's to set aside �30
millions for research into the condition.
Like Hillsborough couple Tracy and William
McCausland whose little boy Sam (2) also suffers from Muscular
Dystrophy, they were devastated to realise their son faced such
an uncertain future.
Julie voiced the feelings of all the parents
present at Westminster when she said they needed people to "sit
up and pay attention to the terrible suffering caused by the
disease.
"Without funding for research our little boy
will be robbed of a future and our hopes and dreams for him will
lie shattered," she added
Tracy and William set up the campaign 'pleasefixsam'
in Northern Ireland after discovering their son was a Muscular
Dystrophy victim.
The campaign's aim is to raise �500,000 for
the charity 'Struggle Against Muscular Dystrophy' over the next
two years.
Tracy who travelled to London with Sam just
days after taking part in a fund raising parachute jump
explained there was double devastation for parents of a child
diagnosed with the condition.
"It is devastating to find that your child is
suffering from such a horrendous condition. It is even more
devastating to discover that there is a lack of funding for
vital research which could eventually promise Sam - and other
young victims of Muscular Dystrophy - the chance of a treatment
which could at least slow the progress of this disease," she
added.
"There have been promising developments in
research over the past two years, but without funding these
potential drugs cannot progress to human trials, and given that
these children do not have the luxury of time this must be
urgently redressed.
"We are hoping that the government will sit
up and take notice of the fact that they have the opportunity to
effectively change the futures of these little boys."
At the lobby Tracy, Julie and Noel had the
opportunity to meet with local MPs including new First Minister
Peter Robinson, Jeffrey Donaldson, Arlene Foster, Nigel Dodds
and William McCrea.
"They were hugely supportive of our campaign
and said they would do everything possible to help us in our
quest for greater funding and awareness of Muscular Dystrophy,"
she added.
Struggle Against Muscular Dystrophy (S.A.M.)
have set up a website
www.pleasefixsam.com which gives detailed information on the
condition as well as information on fundraising events.
Ulster Star
27/06/2008
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