The family of a 4 year old girl from Wexford who has now entered pallative care say the HSE are not offering an end of life service in her home.
Desperate parents of Fiadh O Connor, who has a rare stage 4 paediatric cancer, say they are devastated that her cancer has relapsed for a third time despite aggressive treatment over the last 3 years. Fiadh’s family have said “We have received the devastating news that there is no cure for Fiadh’s disease at this stage. She has now been referred to the palliative care team by her oncology team in Crumlin. She is undergoing chemotherapy to try to control the spread of the cancer in her little body and to stabilise the disease as much as we can. As a family, we want Fiadh to be able to spend the time she has left, at home with her family and little brother Páidí, whom she adores.”
A paediatric home care palliative service has not been available to children in the south east since 2017. This means Fiadh does not have access to her right to die at home solely based on her geographic location. Fiadh’s family say “We have been advised that paediatric home care palliative services have not been available to children in the south east since 2017, despite previous discussions in the Dáil about the lack of resources in the area. We appeal to you, as her representative, to advocate for Fiadh’s right to end of life care at home. We do not want Fiadh to have to spend any unnecessary time in hospital.
They went on to say “Fiadh has fought this disease so bravely – we are so proud of her but unfortunately, her disease is very aggressive. She has undergone multiple major surgeries, Over 120 days of chemotherapy, months in hospital, radiotherapy, intra operative radiotherapy, 12 months of immunotherapy, 2 stem cell transplants and 100s of blood transfusions amongst other things. She has had the best medical care available in Ireland and we fundraised and used our own funds to bring her to Memorial Sloan Cancer Centre in New York for surgery and treatment. We have tried everything we can to give her the best chance to fight this awful disease but we have run out of options and her little body is tired of fighting. Fiadh deserves the right to spend her last days at home surrounded by those who love her.”
Fiadh does not have access to her right to die at home solely based on her geographic location. Speaking to South East Radio News Fiadh’s aunt Orla says the family just want Fiadh to spend her remaining time surrounded by family at home. “Fiadh has 2 aunties who are nurses and 3 aunties who are doctors, all of whom are willing to care for Fiadh in her final days. We will require access to support services but we do need a palliative home care team that would take clinical responsibility for Fiadh’s care.”
