Help Little Rays of Sunshine

Peter now loves visiting Rachel House so much that he squeals with excitement when he turns into the driveway. (Pics: Callum Bennetts)

Children’s Hospices Across Scotland has launched its summer campaign, urging Scots to help the charity provide precious respite stays for more children with life-shortening conditions.

Research conducted by CHAS found more than two thirds (69 per cent) 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 at CHAS’s two hospices – Rachel House in Kinross and Robin House in Balloch.

Peter Flood loves visiting Rachel House with his parents.

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.

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

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 recalled.

“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, he spent 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.

Little by little, Peter improved and, after he was discharged, the family enjoyed their first respite stay at Rachel House.

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

“As soon as we walked through the doors though my feelings changed; it felt more like a hotel than a hospice. We felt at home and were so grateful as we were exhausted – physically, mentally and emotionally.

“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.

“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 refer to it as the “party house” as Peter has so much fun there and gets to run wild and free.”