Christmas is always a poignant time for families at CHAS because for some children, it may be their last.
CHAS – Children’s Hospices Across Scotland – goes to great lengths to ensure as many children as possible with life-shortening conditions get to experience festive fun by organising weekly Christmas parties throughout December in both Rachel House in Kinross and Robin House in Balloch, as well as hosting parties in Aberdeen and Inverness through the CHAS at Home team.
Tiny Callie-Rose (pictured above) was one child who didn’t live long enough to reach Christmas Day but thanks to CHAS, her parents were able find some joy this festive season.
She died 10 days ago aged just five weeks old, the day after a Christmas party in Robin House children’s hospice which was filled with music, laughter and love.
The family, from Dunoon, spent most of their daughter’s short life at Robin House and since her birth, the family have been able to make cherished memories that will last a lifetime.
Born with Edwards Syndrome, a rare genetic condition, Callie-Rose was not expected to survive for long, so each day with parents Isla Limbert and Stephen Martin was special.
“This is not the Christmas I imagined when I was pregnant,” says Isla, 25. “But staying here has been absolutely amazing and they have gone above and beyond to help us.”
Isla and Stephen, who also have a seven-year-old son, Struan, were six weeks away from the birth when they found out that something was wrong: “We were under the impression she wouldn’t survive labour or she would only live for a short time, so she’s outlived everyone’s expectations.”
The family was referred to CHAS by the Queen Elizabeth University Hospital in Glasgow and Callie-Rose was moved to Robin House the day after she was born.
“To be here today for the party is a bonus because it’s not something we expected to get,” said Isla.
For other families, CHAS provides a lifeline throughout the year and the Christmas party is always a highlight.
Debbie and Stephen Elliott and their son Andrew, six, from Cardonald have been coming to Robin House for three years. Andrew has cerebral palsy and complex needs and although he can’t speak he communicates with his eyes – which were smiling throughout the party.
Mum Debbie, who is Andrew’s full-time carer, says: “It’s nice to be around other people who are in the same boat as you. We feel very comfortable here, at home, and we don’t stand out. You know what other parents are going through and you can relate to them.”
The family visit several times a year and feel comfortable leaving Andrew if they need a break from the demands of such a severe illness. The couple intended to have a night out the following evening, safe in the knowledge that Andrew will be in good hands.
“It will be the first time we’ve been out together all year and we can be ‘normal’ for a few hours,” says 52-year-old dad Stephen.
Corinna Robertson, Family Support Manager, said: “We try and make every day about living. Christmas can be emotional because for some families this will be the only one, or last one, they have with their child but we try really hard to make it as special a time as possible.”
Robin House may be there for end of life care, but each day is simply about making the best of what you have and living life to the full.
*If you’ve been touched by this story and wish to donate to CHAS’ Urgent Christmas Appeal 2018, give a family a Christmas they never thought they’d have. Donate to CHAS by clicking here or call 0141 779 6180.