A FAMILY with links to Neyland has launched a special fundraising campaign in a bid to take their young son who has a rare syndrome to an international conference to meet specialists.

Toby Swift, 4, has Marfan Syndrome, a genetic disorder that affects the body’s connective tissue impacting the way the body grows and develops.

His parents, Glyn and Soo, knew he had Marfan Syndrome before he was born. His condition is considered severe and life limiting.

Toby had to have emergency surgery at just a week old to repair a large inguinal hernia at Bristol Children’s Hospital, quite a journey from the couple’s home in Plymouth.

Glyn, who grew up in Neyland and still has family in the area, has set up a Facebook group with wife Soo to try and raise funds to attend the National Marfan Foundation conference, the next one is in Chicago, August 2015.

“Every year It's our aim to raise the money needed to take Toby, to give him the chance to meet the world leading specialists, meet the friends he's made online, and for us to learn how best to manage his condition. 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,” said Soo.

Toby's Bampi, Jerry Swift, originally from Haverfordwest and well known locally, will even shave off his famous moustache if he receives enough sponsorship.

As Toby has grown older more and more issues for him to overcome have been thrown up by the syndrome – his poor muscle tone meant he couldn’t sit up or crawl and then later he had difficulties walking, he was very slim and struggled to gain weight, he’s catch every cough and cold, with one chest infection leading to a collapsed lung at nine months old.

Toby also has extremely large aorta artery which continues to grow so he faces having both that and his aortic valve replaced in the future.

Soo added: “At his last appointment, we were told his heart is so large it 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.

“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 every day. Sometimes his joints dislocate, and he pops them back in with a grimace before asking for some 'pink medicine'. He uses a wheelchair more and more, and his condition is not going to get better. He will not get stronger, or more resilient.”

l Go to Facebook Toby's Marfellous Adventure! at https://www.facebook.com/groups/390135897819728/ to help send Toby on a tripof a lifetime.