MOVE over Elton John – the real shining star of this year’s most touching Christmas ad is a little girl with a life-limiting condition.
Brave ten-year-old Summer didn’t even have a voice until she was 4-years-old, and yet here she is, giving the performance of a lifetime.
Her carefree but heartbreaking rendition of Jingle Bells means that the schoolgirl has finally fulfilled her dreams of singing on a stage.
It’s accompanied by shots of Summer’s complicated medical regime which she has to go through every single day.
The lipstick and sparkly Christmas jumper adored by most girls her age sit alongside the gastrostomy tube, through which she has to be fed, and a ventilator which enables supports her heart and enables her to breathe at all times.
Summer, from Guilford, Surrey, has a mix of atresia and laryngomalacia – two conditions which affect her heart, lungs and skeleton.
Her high medical needs mean her Dad John and mum Wendy rely on support from Shooting Star Chase, which provides end of life care for children and helps families with day-to-day support of children with life-limiting conditions.
The ad hopes to raise funds for the hospice which has helped to look after Summer since she was just 18-months-old.
The incredible little performer says that she’s watched the ad over and over.
“It was filmed at my school,” she explained.
“My friends said, ‘Well done, it’s brilliant’. I started off a little bit nervous but I really adore singing. I’d love to be a singer one day, the songs from The Greatest Showman are my favourite, I really like This Is Me.”
Full-time carer dad, John, said: “Summer is incredibly resilient and determined – she didn’t even have a voice until she was four and now there’s not a day that goes by without her doing what she loves most – singing. It’s a real achievement for a child on a ventilator to sing at all.
Text SSCH18 £10 to 70070 to donate £10 to Shooting Star Chase
“You could see real glee on her face when she watched the advert for the first time.
“There are no more operations available for Summer so she is now under palliative care.
“We have to manage the gradual decline in her health. We concentrate on her quality of life.”
Summer’s condition means that he has to be fed through a tube and breathe via a ventilator at all times to keep her alive.
Despite that, she makes the most of every moment.
The idea for the ad came when Summer’s family visited the Shooting Star Chase hospice summer fair in Surrey and asked to sing with the professional band who were performing.
John says: “She sang This Is Me beautifully. On paper Summer’s life looks incredibly hard but she makes the most of every moment.”
Summer has to take a tonne of medicines every day and normal, everyday childhood activities like jumping off the sofa are out of bounds for her.
The supportive staff at Shooting Star Chase have helped Summer’s family learn how to keep her safe, with nurses coming to the house if her parents need to go to meetings without her.
“If she is staying at the hospice Summer will run off and give the nurses a performance,” said John.
“For us as a family, there is always a shoulder to cry on. The staff always take time to listen. It’s incredible to meet and get to know other families supporting each other too.”
This year, the charity’s Hospice at Home service has seen more children than ever needing end-of-life care and over the last six months alone, they have provided more than 500 hours of Hospice at Home care to families facing the unimaginable.
The team supports families across Surrey and 15 London boroughs with practical and emotional support and nursing care to manage symptoms, and, in the next week, will give many families the chance to spend the last Christmas they have with their child, at home.
Children’s hospices receive very little government funding. This, combined with the increasingly complex needs of children with life-limiting conditions, leaves many families unable to find support.
Nigel Harding, Chief Executive at Shooting Star Chase, said: “Imagine how difficult Christmas must be for those families who have a child with a life-limiting condition.
“So often they simply cannot create the Christmas we all take for granted.
“At Shooting Star Chase, not only do we support families through heart-breaking moments no parent should ever have to experience, but we help to create a special moment in time that they will be able to cherish forever.
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“We will be helping to create those lasting memories for our supported families this Christmas.
“I hope this campaign will raise awareness of how we help those families who have nowhere else to turn and convince you to help us provide those unforgettable, magical memories that we know are so precious.”
Text SSCH18 £10 to 70070 to donate £10 to Shooting Star Chase
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News Pictures Little girl with life-limiting illness sings Jingle Bells on a ventilator to raise money for Shooting Star Chase hospice in tear-jerking Christmas ad
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