Family’s relief that Fiadh (4) will get care at home for terminal cancer

But they said they should not have had to publicly “beg” for the service for their “brave little hero”.

The plight of Laura and Rory O’Connor, from The Ballagh in Co Wexford, was revealed on Friday when they made a public appeal for palliative care to allow their little daughter die at home.

“We are devastated to beg for services and have empathy for any family who has faced this problem in such a critical time in our lives,” the couple said yesterday.

They received the news this month that Fiadh, who was diagnosed with aggressive neuroblastoma in 2019, had relapsed for a third time and will need end-of-life care.

But the south east has been without a paediatric palliative care service since 2017 and Laura and Rory feared Fiadh would not be cared for with her family, including her brother Páidí (3), with whom she shares a special bond.

Following an appeal by Fiadh’s aunt Orlaigh Murphy, the HSE issued a statement on Friday saying a comprehensive package of care would be provided. A spokesman said: “The HSE is very sorry this took so long.”

Fiadh’s parents yesterday thanked the public for the “love and support” shown to the family since they were informed of the devastating news about her prognosis.

“As Fiadh’s family, we will be in receipt of a comprehensive package of care as agreed by the chief operations officer of the South and South East Hospital Group,” said the family.

They have been promised direct contact with the primary care head of services, palliative care community nurse visits and support, and a palliative care consultant to oversee, advise and to provide adequate clinical responsibility.

“We do not at this point need additional palliative care nursing staff to care for Fiadh as family thus far has sufficed. However, the primary care head of services have confirmed they would organise an appropriate person to attend if home nursing support is needed to assist the family.

“Fiadh is lucky she has aunties who are doctors and nurses and they were always going to care for her at home. Thankfully, with this support, our beautiful hero Fiadh will be cared for at home.

“Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.”

The family said this is a description provided by the WHO which also states early delivery of palliative care reduces unnecessary hospital admissions and the use of health services.

“In our experience, this is true and hopefully will act as prevention to availing of unnecessary tertiary health services.

“We are devastated to beg for services and have empathy for any family who has faced this problem at such a critical time in their lives.

“We hope that when the next case arises, the HSE will provide paediatric palliative care for all the children in the south east without having to resort to publicising their darkest hour.

"We were advised that it would be a fight to get home palliative care in the south east. Hopefully quick action is taken and no more fight is needed.

“All said and done, we are delighted to receive a reasonable and timely response. We will provide an update after the next few months again, when appropriate, on how Fiadh is and hopefully, report that the HSE are honouring this promise.

"Hopefully, this is all we will need to do publicly with regards to Fiadh’s care and we can attend to her care as intended.

“We thank everyone for your heart-warming and grounding support. No one likes to hear such dreadful stories and we continue to be delighted to witness the caring nature of our community.

“We just want the services that are right for Fiadh at the moment and the provision of this vital service to be addressed.”

On Friday, the family had revealed their heartbreak at the news that Fiadh's disease was “no longer curable”.

“We did not want to go public with Fiadh’s condition but we have been forced to in order to allow her the right to die at home surrounded by her family. We were advised to begin putting pressure on locally and do whatever we can to ensure it is granted for Fiadh.

"We are broken but will do whatever it takes to have our gorgeous Fiadh at home to be with us and her brother Páidí, who she adores so much.”