'Run in the mini-marathon and help us raise €120,000 for CF patients', says mum
A mum and her five-year-old daughter who suffers from cystic fibrosis are hoping a new campaign will help them secure a new 'wonder drug'.
Marie Duffy and her daughter, Grace, from Castleknock, helped launch Cystic Fibrosis Ireland's One In 1,000 Campaign yesterday.
It aims to sign up 1,000 women for the Women's Mini- Marathon on June 5 and to raise €120,000 for the genetic disorder.
Cystic fibrosis is Ireland's most common inherited life- threatening disease.
It affects the flow of salt and water through the body's organs, causing severe chest infections, lung damage and potential respiratory failure.
Marie said she was called back to the hospital soon after Grace was born to be told she had cystic fibrosis.
She said the impact on her family life has been "significant".
Even though two of her cousins have had children with cystic fibrosis, she never thought she would be in the same situ- ation.
Marie has had to reduce her working week to two days to help care for Grace.
However, Marie, Grace and 550 other sufferers hope a new drug called Orkambi will prove significant in the treatment of the disease.
Hundreds of cystic fibrosis sufferers demonstrated outside the Dail last Wednesday in support of free access to Orkambi, despite a last-minute appeal by Health Minister Simon Harris to call off the protest.
Mr Harris made the plea at a private meeting with CF campaigner Jillian McNulty and Cystic Fibrosis Ireland chief executive Philip Watt last Monday.
"I was at the protest on Wednesday and the hope is we will be able to get the drugs that Grace needs within the next two weeks," said Marie.
Helping to launch the One In 1,000 Campaign at the Irishtown Stadium was RTE Sports presenter Evanne Ni Chuilinn.
"I find the days I have work fairly hectic with two small children at home, so those are the evenings I get out for a jog to clear the head," she said.
"With Cystic Fibrosis Ireland's One In 1,000 campaign, there's another very important reason to hit the ground running - and that is to help raise funds for cystic fibrosis services."
Red Rock actress Ann Skelly said people do not need to be "gym fanatics" to join the mini- marathon.
"It's astonishing to think that we have more people in Ireland with cystic fibrosis than anywhere else in the world as well as some of the most severe types of the disease," she said.
"I've seen first-hand the devastating impact of cystic fibrosis, yet people with the condition have to fight so hard for their rights. It's so unfair.
"We really need to redouble our efforts to do everything that we can to combat this disease, which can have such a devastating impact on so many lives.
"For me the great thing about the mini-marathon is that you can walk, jog or, if you really insist, run all the way to the finish line."
Fellow Red Rock star Roisin O'Donovan was also at the launch.