So here's the story....

When Toby was born, we knew he had Marfans Syndrome way before he was officially diagnosed. We knew that Marfan Syndrome made him long, lean, with long fingers and long toes. He had a large inguinal hernia, which needed emergency surgery at a week old in Bristol Children's Hospital.

As he grew older, the differences between him and other babies became obvious. He had poor muscle tone, and couldn't roll or sit up or crawl. He was very slim, and struggled to gain weight. He'd catch every cough and cold, which almost always culminated in a chest infection and a hospital stay. One particularly bad chest infection caused his lung to collapse, he was nine months old. It was during this hospital stay that his diagnosis was confirmed. His aorta was huge, larger than an adults and we were ushered into a room whilst a very worried Paediatrician rang the team in Southampton; he'd never seen an aorta that big in a child so young, and neither had Southampton.

Toby's aorta continues to grow, and he will need the aorta and the aortic valve replaced. At his last appointment, we were told his heart is so large is takes up the whole of the left side of his chest, he essentially only has one working lung. To add to this he has a severe Pectus Excavatum, or sunken chest and scoliosis, both further limiting his lung function. He's under close follow up, waiting for him to be older enough and strong enough for a good surgical outcome, but surgery needs to be soon to reduce the risk of an aortic dissection- which could have fatal consequences. His mitral valve is also beginning to leak, and will continue to deteriorate to the point that that too needs to be replaced.

Marfans also affects his bones and joints. He has severely complex deformities in both his feet, and complains of pain in his feet, knees, back and neck everyday. Sometimes his joints dislocate, and he pops them back in with a grimace before asking for some 'pink medicine'.

Every day, in everything he does, this is what we keep in our minds.

Every year the Marfan Foundation hold a conference, and in 2015, our family was lucky enough to go, thanks to donations and fundraising efforts of you!

 It's our aim to now raise money for the Marfan Trust, the U.K. based Marfan charity.

Toby's condition is life limiting, nothing will change that. But this trip could change his life. Marfan Syndrome may not be curable, but with good medical management, there'll be no stopping him living a wonderful, full, awesome life.