|
|
McHugh hits out at
Duchenne 'insult'
30.06.08
THE plight of two
Inishowen families living with a rare and fatal
condition has reached the floor of Dáil Eireann.
Three Inishowen boys suffer from Duchenne Muscular
Dystrophy - Liam Mooney from Malin and Carn brothers
Tony (7) and Bobby (2) Lafferty. The condition
affects, on average, one in 3,500 males. |
Last Thursday in the
Dáil, Fine Gael Deputy Joe McHugh and his colleague
Deputy Andrew Doyle called on the Government to find
a way around regulations preventing the State from
funding clinical trials.
“Two families in my constituency who have three boys
affected by DMD between them have been fundraising
for the past month and have raised €70,000. Time is
not on the side of these families as premature death
is looming for their children. |
 |
|
"It is unthinkable that
the Government is unable to find a way to help fund
their participation in the research which they say
is their only hope," said Deputy McHugh. Fine Gael
has suggested a mechanism for the Government to fund
the charity being established by affected families,
Duchenne Ireland, if they are unable to directly
fund the British trials. Both deputies condemned the
Government’s response that it had provided €9,000 of
National Lottery funding to the Muscular Dystrophy
information day. The Fine Gael deputies described
this sum as an "insulting response in light of the
plight of the families affected". |
|
