Mother of late Hope Rose advocates for better support of families during bereavement

Nine years after the passing of her daughter, Hope Rose, Sandra Caulfield is now working on advocating for better support for families who receive life-limiting diagnoses during pregnancy

Hope Rose was diagnosed with Edwards syndrome while Sandra was pregnant. She was born on September 4, 2017, and passed away nine days later.

Two months after her passing, Swinford AC approached Sandra about creating something in Hope Rose’s memory. The idea led to the ‘Run for Hope’ Christmas 5km walk/run, which has been held annually in Swinford ever since.

“After Hope Rose passed away, I had this real need to make things better for other families and to improve services for people who might face the same journey,” Sandra told The Mayo News.

Over the past nine years, the event - organised by Swinford AC alongside Sandra and her husband Jonathan Caulfield - has raised funds for a range of charities, including LauraLynn Children’s Hospice, Mayo Roscommon Hospice, the Jack and Jill Foundation, Mayo Sunflower Children’s Hospice, and The Family Centre in Castlebar.

Pictured is Sandra Caulfield and her family presenting a cheque to The Family Centre

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This year’s ‘Run for Hope’ was also held in memory of Shane Freeman, who passed away in Mayo Hospice in September last year, after battling a long illness.

While Swinford AC plans to continue holding a memorial run, Sandra now feels it is the right time to close that chapter and focus on advocating for perinatal hospice care.

“I carried Hope Rose for nine months, and she lived for nine days, and the run continued for nine years. It just felt like the right time to bring that chapter to a close,” she said.

“The main focus for the next while is advocating for perinatal hospice care with the Sunflower Hospice and making sure families have the support they need.”

Sandra said she and her husband are passionate about ensuring families receive support from the moment they receive a life-limiting diagnosis during pregnancy.

“When a family receives a diagnosis during pregnancy of a life-limiting condition, they should have support all the way through the pregnancy, and for however long their child lives,” she said.

“When we received our daughter’s diagnosis during pregnancy, we didn’t have a formal perinatal hospice service, but we were very lucky to have incredible midwives and doctors who supported us. That’s why we want to advocate for proper services now.”

Hope Rose’s 10th birthday will take place in 2027, and Sandra has already begun planning a special fundraiser to mark the occasion.

“For Hope Rose’s 10th birthday, we’re planning a special fundraiser where we will climb Croagh Patrick over nine days, from September 4 to 12, marking the nine days she lived,” she said.

The fundraiser will be held in aid of Mayo Sunflower Children’s Hospice.

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