Why CHAS offers a lifeline for families facing the unthinkable

Losing a child is one of the most difficult things anyone could ever face. For bereaved parent Cassy Berry, the support of Children’s Hospices Across Scotland (CHAS) has been nothing short of “an absolute lifeline”.

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The Edinburgh mum’s world was forever changed when her son, Cole, was diagnosed with a life-limiting condition. Yet, in the midst of heartbreak, CHAS was there – offering comfort, care and a space to create cherished memories with her son.

Cassy welcomed her twins, Cole and Kensey, into the world in November 2019. Born four weeks early, both babies were initially considered healthy. But Cassy had a mother’s instinct that something wasn’t right with Cole.

Her concerns were soon realised when Cole began having seizures. He was referred to the Sick Kids Hospital in Edinburgh, where doctors diagnosed him with early myoclonic epileptic encephalopathy, a rare and life-limiting form of epilepsy. The tiny newborn was placed in intensive care, where he remained on a full ventilator then changed between the c-pap and bi-pap ventilors (non invasive), for four and a half months. When doctors informed Cassy that nothing more could be done, her world crumbled.

That was when CHAS stepped in.

A chance to be a family

 

The charity offered Cassy and her family a stay at Rachel House, a CHAS children’s hospice in Kinross. It was here that they were able to experience something they had been robbed of in the hospital – a sense of normality.

“We knew we might not have long left with Cole, which was heart-breaking,” Cassy said. “But after four months in hospital with so many restrictions, I was happy to be getting a chance to go somewhere more relaxed, where we could just have the freedom of being a normal family for once.”

With the guidance of CHAS staff, Cassy was empowered to take Cole on outings, including a special walk to Loch Leven with his twin sister, Kensey. Simple moments, like lying on a bed together or enjoying a home-cooked meal as a family, became treasures.

After Cole was fully discharged, CHAS remained by the family’s side. The CHAS at Home team visited regularly, offering unwavering support as Cassy prepared for the unimaginable.

Against all expectations, Cole continued to grow stronger at home. He and Kensey marked their six-month birthday, enjoyed a family holiday to England, and even celebrated their first birthday together on November 8 2020.

Then, just weeks later, Cole’s condition began to deteriorate. Cassy hoped more than anything that they could spend Christmas together as a family.

“The previous Christmas had been spent in hospital, so it meant the world for us to celebrate this one together,” she recalled.

And they did. But as the day progressed, Cole grew more unwell. On Boxing Day, he worsened further, and in the early hours of December 27 2020, he passed away in Cassy’s arms.

A place to say goodbye

Despite her heartache and unimaginable grief, Cassy knew exactly where she wanted her family to be at this time – Rachel House.

“When we got to the hospice, we were greeted with warmth and understanding,” she said. “The staff went above and beyond to make sure Cole was cared for, just as he had been before. That brought me great comfort.

“He was laid in the Rainbow Room in his cosy, fleecy pyjamas and it was so lovely and peaceful there with music always playing in the background and soft twinkly lights. The nurses read to him each day the same Christmas story his sister was being read. This helped me feel they were still connected.”

The staff also helped Cassy create precious keepsakes, such as Cole’s hand and footprints on a special blanket and a pottery Christmas tree made with his tiny fingerprints—treasures she cherishes every year.

A lifeline from CHAS that never fades

Even now, CHAS remains a vital support for Cassy and her family.

“Without CHAS, we wouldn’t have been able to give Cole the best eight months of his life after he left the hospital,” Cassy said. “The level of care never faltered, and that support was extended to every member of our family. They really did go above and beyond.”

CHAS continues to offer bereavement services to families like Cassy’s across Scotland, ensuring that no family facing the loss of a child has to go through it alone.

“I will always hold dear the CHAS staff for the constant support they gave our family through the scariest but most precious time of our lives.”

A gift that gives precious time

CHAS is proud to be part of the ‘This is Hospice Care’ campaign, launching on February 17 2025, alongside 143 hospices across Scotland, England and Wales. This campaign, led by Hospice UK, highlights the vital role hospices play in our communities and the importance of securing their future through charitable giving.

Hospices rely heavily on donations to keep their doors open, and leaving a gift in your will ensures that compassionate hospice care continues for generations to come. A legacy gift to CHAS can provide families with the chance to create irreplaceable memories, just like Cassy’s.

As Cassy explains: “I would urge people to consider leaving a gift in their will to CHAS as the charity is more than just a hospice, it is a lifeline for families in need of unwavering support during the most devastating time of their lives.”

CHAS is there for you

No family should have to face the journey of losing a child alone. CHAS provides vital hospice and home-based support, allowing families to make precious memories together, even in the most difficult times.

If you or someone you know could benefit from CHAS’s services, please don’t hesitate to reach out. CHAS is there to help.

Learn more about CHAS, access support, or find out how you can help ensure their work continues.

Additionally, you can follow CHAS on Twitter and Instagram, like them on Facebook or leave a gift in your will.