Monday 24 April 2017

Mother's battle to get life-saving drugs approved for daughter

Hazel Robinson outside the Dáil. Photo: Kyran O'Brien
Hazel Robinson outside the Dáil. Photo: Kyran O'Brien
Catherine Devine

Catherine Devine

A desperate mother-of-three has been sleeping outside the Dáil in the hope of getting long-term access to the life-saving Orkambi drug for her young daughter, who has cystic fibrosis (CF).

Hazel Robinson, from Drumlish, Co Longford, said she'll do "everything in her power" to help her sick daughter Gypsy Ann (14).

"My daughter Gypsy has cystic fibrosis but recently she got accepted onto the Orkambi drug programme trial on compassionate grounds," she said.

"It's great that she's getting to try it but it's horrible in another sense because we've run out of all other options. Her consultants said that the only other thing after this is a lung transplant."

Read more: Cystic Fibrosis Ireland call on Government to 'speed up' discussions on Orkambi drug as  annual fundraiser launched

Ms Robinson said she has done "everything she can think of" to gain attention for Gypsy.

"I'm appealing to the public, to the TDs, to [Health Minister] Simon Harris, anyone that can help get us access to Orkambi for our kids. It's horrible a 14-year-old has to go through this."

Irish Independent

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