Gabriel's Story
"Would our little boy survive to see Christmas?"
“We are Teena and Sebastian, Gabriel’s parents. And this is our son’s extraordinary Christmas story.
“At our five-month scan, the image of our baby boy flickered onto the screen. And everyone stopped talking. Something was wrong.
“We were told his bones weren’t really there, his spine barely developed, his tiny arms and legs too short. It was unlikely he would survive. Terror gripped us. Sleep became impossible.
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?
- Teena, Gabriel's mum
Living in hospital
“After an agonising test, we were told our baby had Spondyloepimetaphyseal dysplasia – a 1 in a million genetic condition so rare that no one could predict how it would shape his life. He would be short, could have facial abnormalities, maybe brittle bones. And there was a 50% chance that he would be stillborn.
“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.’
“Gabriel was born on 2nd June 2023. They didn’t put him on my chest, didn’t even wait to clean him. I got to touch his tiny finger – then they scooped him up and ran.
“He was taken to intensive care and immediately intubated. We were given a room in the hospital’s parents’ accommodation. This was 15 months ago. We’ve been here ever since.
“X-rays, endless tests, an MRI for his head and spine – every day a new worry. His chest was too small, his lungs battled for every breath. The ventilator kept him alive but took his voice – he couldn’t even cry.
“At two months old, he had his first major surgery, a tracheostomy – a hole in his windpipe to give him an alternative airway for breathing. But it came with new fears. Now, if he moved too much, the tube could cut off his airway.
“The first time this happened was horrifying. One minute he was fine, the next he turned blue and went cold in my arms. For months, this was happening every other day. We asked, “Will you be able to save him every time?” They didn’t know.
“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.
“That, and the extraordinary, superhuman NHS teams at the hospital.
Support from ECHC
“We’ve missed out on so much of what it is to be a ‘normal’ family. This is what Edinburgh Children’s Hospital Charity really understands. The ECHC team goes above and beyond, day in day out, to give so many children in the hospital the very best lives they can. And your gift this Christmas will mean so much.
“We always wanted Gabriel to be treated like a baby, not as a child who is ill. Even in the chaos, he gets to play, to laugh, to have moments of happiness. ECHC makes that happen, and they need your support.
“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.