Lucy was at home in Ullswater Grove, Fulwell, Sunderland, with her parents Alan, 51, and Jane, 49, when the family received a call that would change their lives forever.
Lucy’s brother Liam was nine months into the trip of a lifetime in Australia, and the call, on August 9, 2006, was from a doctor at the Royal Perth Hospital. Liam had been taken ill after tearing the biggest artery in the body, the aorta, near the heart.
He underwent emergency surgery to repair the tear, which had been caused, doctors thought, by a condition known as Marfan Syndrome.
But four days later, Liam suffered a seizure from which he never recovered.
Lucy explained: “Marfan has a number of distinctive characteristics, including exceptional height, large hands and feet, being double jointed and a pigeon chest.
“It’s really frustrating for us because Liam ticked all the boxes and yet nobody in the medical profession here ever picked up on him having Marfan.”
Liam was 6ft 10in, slim and had always had big hands and feet. He was fit and active, playing football for a Sunday league side and rarely missing a Sunderland AFC game. But because Marfan, which is a genetic disorder of the body’s connective tissue, had been gradually enlarging Liam’s heart, football was, unknown to anyone, a potentially deadly activity.
If diagnosed early, sufferers can protect themselves by avoiding exertion, but Liam’s diagnosis came too late.
One in 5,000 people suffers from the treatable condition, which in 25% of cases, including Liam’s, occurs spontaneously and is not passed on by a parent. It can be picked up on an echocardiogram.
Lucy said: “We have all been tested and fortunately none of us has Marfan. But for me, trying to raise awareness of it has been a coping strategy, as well as a way of keeping Liam’s memory alive.
“And obviously Liam is very much in all our thoughts today (on her birthday).”
Lucy’s dad Alan said: “Of course, Liam should be 24 now and he should be here. But Lucy has been incredibly strong and we will all be celebrating Liam’s life. He would have been very proud of her.”
Last September Lucy threw her first ball and all in all about £41,000 has been raised for the Marfan Trust.
Lucy said: “My main activity at the moment is the next ball, which is on September 27 this year at My Legends on Sunderland High Street. And because Liam was such an avid supporter of the Black Cats we are encouraging a red and white theme.
“We aren’t even two years on and I am finding solace in organising these
fundraisers, because if it helps even one more person identify the characteristics Liam had and get an echocardiogram, then that will help us as a family.”
Tickets for the event are £30, and can be obtained by contacting