Aisling Golden (right) with mum Mary-Teresa and sister Grainne (left)
In a truly heartbreaking story a young cystic fibrosis sufferer had appealed that a cure be found for the severe illness, just moments before her tragic death.
The brave young woman named Grainne “GG” Golden who sadly passed away at Dublin’s St Vincent’s Hospital recently, made the emotional plea to her relatives at her bedside, who have since rallied together to ensure the 21-year-old from Co Sligo woman’s dying wish become a reality.
According to the Irish Mirror Grannie removed her breathing mask and made one last heartfelt appeal to everyone that they continue the campaign to persuade the Irish Government to approve the life-saving drug Orkambi and make the “opt-out organ donation” into law.
Grannie’s grieving aunty Pauline Hickey told the newspaper: “Our hearts are broken for ever at the loss of our beautiful GG who fought for her entire life against CF in order to live somewhat of a ‘normal’ life. “GG did so much in her short life, but never without a fight against the ball and chain that is cystic fibrosis, GG, her family and friends fundraised at every opportunity in order to raise money to find a cure.
“Her loss has left a huge hole in our lives. We believe she would still be with us now, lighting up our lives with her beautiful smile and hearty laugh, if that drug [Orkambi] was given to her by the Government. “We have to continue her fight now and pursue her campaign.”
The brave young woman’s family are now appealing that the Irish government introduce a new law which is currently in other EU countries, which would see children who receive their PPS number being automatically made an organ donor with an option to opt out. Grainne’s heartbroken family believe this new law would save crucial time and stress for doctors, nurses, counsellors and victims’ families who need a match as quickly as possible.
Meanwhile Grannie’s grieving mother Terri revealed that she did everything she could to help her seriously ill daughter whilst she was alive.
An understandably emotional Terri said: “This gives patients a real chance at life, which is proven by the medical trials. Who knows what this could lead to, the possibilities are endless.” She also said her daughter was proud of her local Senator Marc MacSharry for proposing the drug be approved and repulsed by the politicians who voted No against Orkambi.
Terri also told the Newspaper: “These people must not pay attention to their community as we have lost 23 young people in the North-West Region alone to cystic fibrosis in the last 20 years.
Although the potentially life saving drug Orkambi would cost the state €160,000 per patient a year, Pauline believes its much needed
introduction for 500 out of the 1,200 patients who are compatible with the drug would reduce the need for hospitalisation by up to 40%.