The story of one Irish woman’s battle for survival against all the odds has captured the attention of thousands of people around the country as her family are now calling on the Irish public to sign a petition to get her the treatment she so urgently needs.
Mary Gorman from Laois was diagnosed with an ultra-rare and life-threatening blood disorder called Paroxysmal Nocturnal Haemoglobinuria (PNH) back in October 2012. Without treatment, this disorder can have a life expectancy of just five to ten years.
Since her diagnosis, Mary has reportedly suffered from acute kidney damage and was forced to take early retirement from her job with the HSE.
“The petition is for life-saving treatment for my mother, Mary Gorman,” explained Mary’s son, Paddy. “In January 2013, mam was prescribed a drug called Eculizumab by her consultant in St. James’ Hospital, the only known drug to effectively treat and successfully manage the symptoms of her blood disorder.
“However, mam has been denied access to this drug to date as the HSE Senior Management Team have refused to fund it. They are effectively leaving her to die,” he stated.
“Mam has already been forced to retire from her work as a physiotherapy manager in the HSE due to her health deterioration. This deterioration will not stop until she is given access to treatment or, heartbreakingly, until she dies. The petition has been set up to try and force the Government and the HSE to take notice of mam’s situation and finally grant her the treatment she needs, before it’s too late.
“While I may be slightly biased, I believe my mother is one of the most generous, helpful, loving and giving people on this planet but unfortunately now she cannot find the same qualities in others within our government and health department. I hope that you can help me, in some way, spread the word about mam’s fight for life – every signature counts.”
Described by many others as a “honest, hardworking, kind and caring woman who has given her life to helping others,” Mary’s battle has rocked her local community. Unfortunately for the Laois woman and her family though, the battle continues as Mary reportedly continues to be denied access to the drug that could help save her life as a result of its high cost.
According to her family, Mary has now been waiting for 22 months for the treatment that will save her life and though time is against her, they are hoping that somebody, somewhere will sit up and take notice of their plight. You can sign the petition for Mary here.
