People in Ireland, the US, and around the world have thrown themselves behind a campaign to help a young Irish woman living in New York City who needs a double lung transplant.
Orla Tinsley suffers from cystic fibrosis (CF) and a GoFundMe page set up by the writer Belinda McKeon has (at the time of writing) raised $62,000 towards her surgery – well surpassing her initial goal of $50,000.
Tinsley, a writer and CF activist, made America her home in 2014 when she moved to study at Columbia University. Although her health insurance has said they’ll cover the surgery, they won’t cover the costs of after-care. For a double transplant patient, the costs of such care can be high – particularly if her body rejects the transplanted lungs.
Moving back to Ireland for the operation has been ruled out by her doctors on safety grounds.
“Orla Tinsley is generous, inspirational, and completely in love with life in a manner which reminds the rest of us of the reasons why we might feel the same way,” McKeon writes.
“She's facing a very tough time ahead, and we can help to make it a little easier and less stressful.”
For many years Tinsley was a public activist for CF patients in Ireland and campaigned for a purpose built care unit in St Vincent’s Hospital in Dublin.
After moving to America she was prescribed Orkambi and she wrote to Ireland's Department of Health asking that they make it available to Irish patients too.
“I realized I no longer lived from month to month, beneath the weight of constant intense medical monitoring and painful evaluation of every single action I took and how that might affect my energy and health for the day. I lived in this explosion of the now... This was a miracle for me.”
The drug has since been made available for patients in Ireland.
A message from Tinsley appears on the GoFundMe page:
“I am proud that I have been able to make a positive contribution with my life and hope I have been worthy of it. Living with CF is a challenge but living at all can be a challenge. I was lucky to have a mission and to know it from a very young age. Now I am older and my time is running out. Unless I get a life-saving lung transplant I will die. I am too unwell to come home to Ireland for the surgery but I am lucky to have an amazing transplant team here. Transplant is about recovery and hard work afterward where I will have to rehabilitate and live with my new lungs. Hard work afterwards is what make the difference in survival. I need to stay close to the hospital for one year until I recover and work hard at rehabilitation and take on all the other challenges post transplant life bring. I am ready for this. I am ready for this new challenge and my warrior heart is open. But I need your help. I am so grateful to Belinda for being so supportive and taking the pressure off me at this time.