Little Rays of Sunshine appeal

Children’s Hospices Across Scotland (CHAS) is launching its summer campaign today urging Scots to help the charity provide precious respite stays for more children with life-shortening conditions and their families across Scotland.

Research conducted by CHAS found more than two thirds (69%) of families supported by the charity and who took part in a survey identified gaps in the care and support they receive for their dying child. The findings highlight the urgent need for more consistent social care support and more respite care for families who are often at breaking point.

The ‘Little Rays of Sunshine’ appeal aims to raise vital funds so that more families can enjoy special breaks together at CHAS’s two hospices - Rachel House in Kinross and Robin House in Balloch.

Currently there are over 16,700 babies and children with life-shortening conditions across Scotland and CHAS is determined to help as many families as possible enjoy precious time together filled with happiness and joy.

For Amanda Flood from Aberdeen, staying at Rachel House always “feels like a holiday in the sun” to her family.

When her own little ray of sunshine, Peter was born he was so poorly he was not expected to survive the night.

She and Peter dad’s Graeme were told to prepare themselves for the worst when the tiny tot was diagnosed with Stage 5 Renal Failure at birth.

Peter, who also has Down Syndrome, was in Intensive Care for the first three weeks of his life then spent another four weeks in the neonatal ward.

“It was a really terrifying time but against all odds, we saw him starting to slowly improve each day,” Amanda recalls.

“We knew then he was a wee fighter. He was literally fighting to live.”

Now, aged four, Peter continues to fight to live every single day.

Just before his fourth birthday, Peter ended up spending ten weeks in hospital, five of these in intensive care ventilated and placed in a drug induced coma. During this time he had to be resuscitated three times, twice in the same day just a few hours apart.

His parents were taken to a room by the consultants and given the devastating news that they had nothing else to offer Peter if this was to happen again.

It was up to Peter now to once again prove how much he wanted to live.

Little by little, Peter did continue to improve and, after he was discharged from hospital, the family enjoyed their first respite stay at Rachel House.

CHAS was more like a hotel than a hospice

Amanda, who had to give up her job as a clerical worker to become Peter’s full-time carer, said: “I had been wary of coming to the hospice as at the time I associated it with end of life.

“As soon as we walked through the doors though my feelings changed. We were made to feel welcome and it felt more like a hotel than a hospice. We felt at home, and we were so grateful of this break as we were exhausted, physically, mentally and emotionally and running on empty.

“The staff not only took great care of Peter but of us too, there was always someone to listen to us and ensure we had everything we needed. At mealtimes there was always an array of delicious food for us, all freshly prepared by the amazing chefs.

“Peter was still very poorly but we were able to go for walks together and because the nurses were taking care of him I was able to just be mum for the duration of the visit. We were able to relax and rest together while Peter was cared for. It was so lovely being able to just sit and have a coffee or a meal together and also just have a shower or a bath in peace without being shouted on or listen for any alarms going off.

“Peter loves Rachel House and squeals with excitement when we turn in the driveway. We, as a family affectionately refer to it as the 'party house' as Peter has so much fun there and gets to run wild and free.”

"He loves the soft playroom and the sensory room and enjoys getting outside into the garden too. He has an incredible zest for life and is our little ray of sunshine. I am so proud of him."

“Visiting Rachel House is honestly life changing for us as it is the only time we get a break in between hospital visits and stays. I can’t explain how grateful we are to CHAS and their supporters who make this possible.”

Sue Hogg, Director of Children and Families at CHAS said: “There are thousands of families across Scotland just like Peter’s dealing with the unthinkable reality that their child may die young. It is not easy for these families to jump on a plane for a holiday or plan too far ahead for any sort of break away together which is why the respite stays we provide at our hospices are so precious.

“Families are made to feel at home, enjoy home cooked meals and a relaxing night’s sleep, safe in the knowledge that their child is receiving the highest level of care. CHAS is determined to provide this service to as many families as possible but we’re reliant on the great Scottish public’s loving kindness. It is their donations to our Little Rays of Sunshine appeal that make these lifeline breaks for families possible.”

To find out more about the appeal and to donate visit: https://www.chas.org.uk/appeal