A baby boy who has spent his entire life at Edinburgh’s Royal Hospital for Children and Young People (RHCYP) has now had the honour of turning on the hospital’s Christmas lights.
One-year-old Gabriel Sebastian was born 17 months ago at the hospital and has not spent a single night at home since. His parents, Teena Thomas and Sebastian Paul, have never left his side.
Gabriel has Spondyloepimetaphyseal dysplasia – a 1 in a million genetic condition so rare that doctors cannot predict how it might shape his life. He may be short and could have facial abnormalities and brittle bones. He is unable to breathe by himself so has a tracheostomy.
Yesterday afternoon, alongside his proud parents, and Hibs captain and Edinburgh Children’s Hospital Charity volunteer Joe Newell, Gabriel pressed the big red button to light up the 20ft tree and surrounding area of the hospital which has cared for him since birth.
Mum Teena said: “At our five month scan, we were told something was wrong with our baby. His bones weren’t really there, his spine barely developed, his tiny arms and legs too short. And there was a 50% chance that he would be stillborn.
“But I could feel him moving so strongly, like he was saying, ‘I want to come into the world Mama.’ How could we not fight for him?
“We prepared for the worst but clung to hope. We bought a Moses basket, decorated his room. We thought, ‘We’ll be in hospital maybe five days, then he’ll come home.’ He was born on 2nd June 2023. We’ve been living here ever since.
“Gabriel’s smile is the most powerful thing. Through every invasive operation, every painful procedure, every heart-wrenching emergency, he comes back smiling. And that keeps us going.”
Teena and Sebastian will always be grateful for the incredible care and support they and Gabriel have received from the RHCYP, as well as from Edinburgh Children’s Hospital Charity (ECHC).
The family is supporting ECHC’s Christmas appeal, which asks supporters to help bring the sparkle to seriously ill children and families in hospital this Christmas.
Teena continued: “The care and love we have been shown by everyone at the RHCYP has been outstanding. Everyone has been such a huge part of his journey. It’s thanks to everyone there that Gabriel is here with us this Christmas.
“We are honoured to have Gabriel switch on the Christmas lights for ECHC. We’ve missed out on so much of what it is to be a ‘normal’ family. This is what the charity really understands. We never wanted him to be treated like a child who is ill. Even in the chaos, he gets to play, to laugh, to have moments of happiness. ECHC makes this happen.
“Gabriel’s future is uncertain. We don’t know if he will ever breathe on his own. We don’t know if he will speak or eat. But we do believe he will be with us. If you’re heading home this Christmas, please spare a thought for children like Gabriel who will be in hospital instead this year.”
The Christmas Light Switch On is just one of many hospital activities that ECHC has planned to make this Christmas one to remember for children who are sadly too unwell to spend it at home.
Pippa Johnston, Deputy CEO at ECHC, said: “We would like to say an enormous thank you to Gabriel and his wonderful family for helping to make the hospital’s Christmas light switch on so memorable. They are a remarkable family and Gabriel is a little star in every sense of the word.
“Every year, in partnership with our friends at NHS Lothian, ECHC works hard to bring the sparkle to the hospital at Christmas. We rely solely on donations to do this. We are asking the people of Edinburgh (and beyond) to help make Christmas extra special for children in hospital this year.”
Anne Milburn, General Manager for Women’s and Children’s Services at NHS Lothian, said: “Christmas can be a really difficult time for patients who are unwell, and so watching Gabriel and his family turn on this year’s Christmas lights at the RHCYP has brought a real sense of festive cheer. I’d like to extend our thanks to them for making the light switch on so special.
“Our expert staff and ECHC go above and beyond every day of the year to make sure that children experience the best care, and so it’s important that those who will be spending most of the festive period in the RHCYP still experience the magic of Christmas.”
To make a donation to ECHC’s Christmas appeal, visit www.echcharity.org/donate