18 Aug 2022

Longford mother enlists the help of high profile names in fight for CF drug Orkambi

Longford mother enlists the help of high profile names in fight for CF drug Orkambi

A number of high profile names have stepped up in support of the ongoing campaign to have the wonder-drug Orkambi introduced for Cystic Fibrosis sufferers in Ireland.

Members of the cast of the ever-popular series 'Mrs Brown's Boys', including star and writer Brendan O'Carroll, as well as entrepreneur Gavin Duffy, jockey Ruby Walsh and Gogglebox star Sandra Martin paid a visit to Longford woman Hazel Robinson and her daughter Gypsy, during one of Gypsy's stays in Our Lady's Children's Hospital, Crumlin recently.

“The more people we can get to advocate for us the better,” Hazel told the Leader last week. “In the New Year, we're going to see if we can get some more famous faces. 

“If I can get enough high profile people behind it, it might cause a bit more pressure.

“I also plan in the New Year to contact every County Council. We started from the top down and it didn't work, so now we'll work from the ground up.”

Hazel also hit out at Health Minister Simon Harris for failing to meet with families of Cystic Fibrosis sufferers, despite the issues they're currently facing.

“We're a year on now and I don't have much faith in them (Vertex or the HSE).

“I want to try and meet Minister Simon Harris in the New Year, too.

“He didn't ever acknowledge the petition. 

“I can't understand why he, so far to date, has danced around meeting with anybody.

“So if the mountain will not come to Muhammad, then Muhammad must go to the mountain!”

Admitting that it has been a difficult, frustrating year, Hazel shared her fears about the year ahead.

“I'm going into next year looking at my child, if she's lucky, to get somebody else's lung.

“That's the year we're looking ahead at.

“My desperation is literally turning to anger.”

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