Parents of children with life limiting illnesses and those who have experienced the death of a child, are taking part in a family engagement workshop this weekend to help shape the proposed Sunflower Children's Hospice in the west of Ireland.
They will have input into the design and development of this major palliative healthcare project planned for Castlebar, Co Mayo.
There are more than 3,800 children in Ireland today with life-limiting illnesses and the Sunflower Children's Hospice will be the first such facility to be built outside of Dublin.
The hospice will include eight in-patient and respite bedrooms and is expected to be completed within approximately two years.
For the families attending the workshop, this is an opportunity to share insights on how best to provide appropriate supports and comfort for the children staying here.
The Cox family from Lisacul in Co Roscommon care for 11-year-old Daire around the clock. His mother Linda explains what a hospice in the West of Ireland would mean for the whole family.
"Caring for Daire is a daily battle to keep him well and give him the best quality of life we can. Some days, just keeping going feels like a victory. A hospice and respite centre closer to home wouldn’t just save miles on the road, it would give families like ours breathing space, strength, and hope."
Daire has cerebral palsy, a lifelong neurological condition that affects movement, muscle control and posture. His needs are "severe and complex". He also lives with epilepsy and experiences seizures which require ongoing medical management and close monitoring.
Daire receives care and respite at the LauraLynn Children's Hospice in Dublin, but Linda says the journey increasingly takes it toll on the family.
"The care we receive at LauraLynn is incredible and we are immensely grateful. But the journey is becoming harder and harder. His teenage brothers are very supportive and protective and they accompany myself and my husband Brendan to Dublin for respite.
"Cathal and Aaron stay close to Daire in the ambulance holding his hand and talking to him. But the trek back and forth between Roscommon and Dublin is a huge undertaking for teenagers with busy school lives and sports and so on. I have to think of their needs too and their quality of life."
Linda says that caring for a child with complex disabilities is not something families can manage alone.
Daire requires continuous, specialist care to maintain his health, comfort and quality of life. She says a hospice in the west will be life changing for all of the family.
"Access to local services such as community nursing, respite care and specialist disability supports is essential, not just for the child, but for the wellbeing of the entire family. These services allow families to cope, to rest, and to continue caring at home in a sustainable way. Respite doesn’t fix everything - but it helps us keep going. We cannot wait to see the hospice open in Castlebar," she says.
The new hospice will serve eight counties along the western seaboard and funding for the project will come from the Mayo Roscommon Hospice Foundation. The overall costs are estimated to be in the region of €12m-14 million. Around half of that amount has been raised so far.
Martina Jennings is CEO of the Mayo Roscommon Hospice Foundation and says: "There are so many families with children with life limiting illnesses in the west of Ireland that require paediatric palliative care services and without this service many face long journeys to Dublin or limited in-home support, which often leads to immense emotional strain, family breakdowns, and siblings struggling in silence.
"Together, we can build Sunflower Children’s Hospice and provide hope, comfort, and care for families who need it most. No longer will the services that children and children young adults be defined by where they are born.
"To meet this critical need, we must raise €7 million over the next year to build Sunflower Children’s Hospice. We have already raised €6.5m, of the estimated €12m-€14m cost. We did it before for Mayo and Roscommon Hospices and I know we can do it again with the supportive communities we have.
"This time we have the support of eight counties and I’m calling all on businesses, schools, universities, community groups, families and friends to join us in our fundraising efforts. Every contribution, no matter the size, will go directly towards creating a hospice that will provide much-needed care and support."
Consultant Paediatrician and Clinical Director for Paediatrics, Women's and Children’s Directorate Hilary Stokes says: "This approach complements our ongoing efforts to promote integrated care, which is a key principle in delivering seamless, person-centred support.
"By bringing families, communities, and professionals together, we can foster compassionate communities and ensure care is coordinated across both community and specialist services."
Linda Cox sums up what the Children's Sunflower Hospice will mean for Daire.
"Daire is deeply loved and valued within our family and community. While his disability brings significant challenges, he is first and foremost a person, deserving of dignity, understanding and the best possible care.
"The support services available locally will make a profound difference to families like ours across the west of Ireland."
Separately, construction is under way on a second Daisy Lodge in Cong, Co Mayo to provide therapeutic short breaks for children with cancer and their families.
The centre is expected to be up and running in early 2027.
It complements the existing service provided in Newcastle, Co Down.
The €20m project is funded through a combination of €7.5 million from the Irish Government, namely the Department of Health and Shared Island Fund, and significant donations from the public and private sectors.
