"There's no point glossing over Sophie's condition. Everyone here is aware of what it is and how it affects her everyday life. She has carried this with incredible courage and strength of character. And she has chosen to rise above it with a grace and elegance that sometimes really does take my breath away."
These were the moving words of Sophie Carr's father, Harry Demko, at her wedding to her husband Jamie last July. It was a wedding speech to tug the heartstrings, and there was barely a dry eye in the room as he told his daughter, "You're braver than people know...you are and always will be my special girl."
Sophie, 27, was diagnosed with a type of mitochondrial disease called Kearn-Sayre syndrome (KSS) just before her 18th birthday. One of the affects of the condition is that her body is unable to store energy, making her very underweight and physically weak. Mentally though she is as strong as they come, and her positive outlook on life is one of the things that made Jamie fall in love with her.
The Lily Foundation has helped support Sophie and her family for many years, and it was at the charity's annual ball in 2016 that Jamie proposed to her.
"It was such an emotional evening," remembers Sophie. "The Lily Foundation has helped a lot over the years, we can't thank them enough for their support. The Lily ball raises lots of money for research every year, and now it has amazing personal memories for Jamie and me."