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Christmas Appeal 2023

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George’s story, by mum Rame

Collage of newborn photos of George in hospital

I’ll never forget the moment doctors told us George’s condition wasn’t ‘compatible with life’. That there was no cure and few treatments. I broke down sobbing.

The next few weeks, my husband and I were in a state of limbo waiting, hoping, that George would pull through. That I could tell his big sister, Holly, that everything was going to be OK. But we were warned to prepare for the worst, so we had George christened at his bedside and planned things no parent should ever have to think about.

After weeks of uncertainty, George became our little miracle. He defied the odds and was finally well enough to go home. I don’t think I can put into words the relief I felt. But George wasn’t cured and caring for a child with a rare condition hasn’t been easy.

Picture collage of George through the years with his family

George had to be hooked up to oxygen 24/7 and he became so scared of anything in his mouth potentially blocking his airway that he had to be tube-fed.

Whenever he caught a virus or had difficulties with his breathing or feeding, we were back in the hospital. There have been many ups and downs, but I feel so fortunate that George is here and doing well because I know the odds were against us. It breaks my heart to think there are families out there right now, facing a Christmas without their child because of this condition or another rare disease.

That’s why it’s such a relief to know Action is supporting research into lung surfactant deficiency. All I want for Christmas is hope for a cure, and it’s the work of organisations like Action that takes us a step closer to that day. 

Please give what you can to help Action this Christmas and support this potentially life-saving treatment for children like my gorgeous George. Thank you! x

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