It was Grainne's last wish to fight for miracle drug
A year ago 21-year-old Gráinne Golden died from Cystic Fibrosis. Her family talk to Jenny McCudden about honouring her memory
When Grainne Golden went into hospital just over a year ago now, it was to be for just ten days.
Her family did not realise she would not be coming home again. But the Cystic Fibrosis patient deteriorated rapidly and a couple of days before her death, it became clear that the disease she had been battling all her life had taken hold.
In the moments before she died, as her lungs were flooding with Carbon Dioxide, the 21-year-old Cartron woman took off her oxygen apparatus and told her mother Terry to 'keep the campaign for Orkambi going.'
The patients rights advocate was talking about the 'miracle' drug Orkambi which treats the causes of CF rather than just the symptoms and in doing so completely transforms a CF patient's way of life.
"It's as close to a normal life as they are going to get," says Terry. The new drug is seen as a game-changer. A number of Irish patients have taken it for the last three years as part of a clinical trial which has been a resounding success.
Grainne, who was too ill to take part in the clinical trial wanted to see the roll out of Orkambi for CF sufferers across the country despite the high cost of the drug.
"She was a great researcher. She knew the life changing qualities of this drug for people like her and how it could prevent this horrendous illness taking hold, where patients are suffering and choking to death. The fact is she was able to tell us to continue to fight for Orkambi in her dying breath. So how can we as a family dishonour her?" says Terry.
Terry's oldest daughter Aisling (24) is also committed to keeping the pressure on for Orkambi. Just two weeks ago, the articulate young woman gave a presentation to the Dáil on the issue.
Terry says: "We are not just campaigning for Grainne but for all of her CF friends, so many have passed away in the last year and many others are very ill in hospital."
Both mother and daughter were part of a group that marched on the Dáil at the end of February. This was particularly poignant for the family, a year on from Grainne's passing.
"The passage of time does not make it any easier," says Terry, "We just put one foot in front of the other and get on with it. That is what she would of wanted."
Grainne was ahead of the curve on this issue and as early as three years before she died she started a facebook campaign for Orkambi. But as those in the Cystic Fibrosis community in Ireland know only too well, 'Time was not on her side.'
That is something that Terry finds extremely difficult as she explains: "We attend vigils and protest marches and the thing that strikes you is the number of CF patients out in the cold looking for a life saving drug. Many are in wheelchairs with their oxygen tanks in tow, and have come straight from hospital wards. They are in wheelchairs because they are too ill to stand up. Time is not on their side."
Many CF patients spend the majority of the year in hospital. Grainne would spend up to nine months in hospital. The Ballinode College student received her Leaving Certificate results in hospital. But this would never stop her from having a positive outlook in the face of such cruel adversity.
She was a young girl with a lust for life and as her mother Terry says 'If she wanted to go to something she would use every single ounce of energy that she had to go.'
This determination stood her well in her role as a patient advocate. "She was very feisty and stubborn, very outspoken. She laughed out loud," recalls Terry. "You got it from the hip and if you didn't like it, too bad. She grabbed life by the throat. She was very strong willed and a great advocate for patients rights. She loved the papers and read them daily. If you did not get the Champion every week, she would be asking what was wrong with you. She kept up to date."
And today, in her absence both Terry and Aisling are also resolute in their campaign on her behalf. They have a special word of gratitude for Fianna Fail TD Marc MacSharry who was the first politician to raise the issue of Orkambi in the Seanad in 2015. Since then he has continued to keep the discussion in the Dail chamber.
He has slammed Taoiseach Enda Kenny's government over negotiations between the makers of the life-changing CF drug Orkambi and the HSE's drugs committee.
"It's been more than 5 weeks since Vertex were told that the Drugs Committee had completed its considerations and that the recommendations were being sent to the HSE directorate.
"The Government's handling of this extremely serious issue has been haphazard and chaotic to say the least. The offer from Vertex is reasonable and should be approved without delay.
"I am urging the Taoiseach and the Minister to stop stalling on this important issue. It is time for the Government to wake up to the seriousness of the issue and ensure that this drug is approved without delay".
The Golden family are hopeful that the drug will be introduced and believe that Simon Harris as Health Minister is their best hope for this becoming a reality. Hundreds of Irish people suffer from this genetic illness. Terry says: "It was very hard for Grainne knowing that this life changing drug was out there for her and she had no access to it. When she came out of hospital she lived life to the full. She loved school and was very bright and was studying to be a veterinary nurse. She had so many plans. But people with CF live with so many risks. They can be struck down at any time. They are lucky to reach the age of 30."
Terry is also grateful to her neighbours in Cartron, Gino O'Boyle and Nigel Gallagher. "Our neighbours and friends have gone above and beyond for us during the funeral and after. They have been amazing and not just in Cartron, all over Sligo. We would not have got through this year without the support of the people of Sligo."