A SEVEN year-old boy with a backwards heart and a rare genetic condition continues to defy doctors' prognoses.

Dylan Myers from Ongar weighs 12kg, is 82cm tall and fits into the clothes of a 12 month old baby.

Doctors know that his condition is genetic and life limiting, but have been unable to diagnose it beyond calling it SWAN - syndrome without a name.

"He a miracle, doctors thought he would never survive," said mum Danielle Myers, 40.

"He has had about 50 operations and he is on about fifteen medications a day, including chemotherapy injections which I give to him."

Mrs Myers and husband Richard first discovered Dylan would have health problems in the twentieth week of her pregnancy, when a scan showed his heart was the other way round.

"At the time that was like the end of the world," Mrs Myers added.

"Little did we know that it was actually the beginning."

A rocky but manageable start to life in which Dylan 'cried and cried and cried' quickly turned into a nightmare, when he 'died' in his mother's arms.

Although he spluttered back to life, Dylan's parents are regularly terrified when he stops breathing.

His mum said: "The most upsetting for us is the part of Dylan’s condition which means he stops breathing several times a day.

"He literally dies in our arms, but he has got some fight."

Living day-to-day with dozens of conditions - from severe growth delays and high blood pressure to food allergies and stomach ulcers - means Dylan spends a large amount of time in hospital.

"He is under 15 different teams at Great Ormond Street Hospital," Mrs Myers said.

"Not one can make him better. They all just manage his care. He is literally serviced from his eyes to his toes. Dylan is so lucky to have his care coordinated by the SWAN Nurse at GOSH as being under so many teams can be hard for me to manage as a mum.

"Dylan is on so many medications from morphine to manage his pain, oxygen to help him when he stops breathing to the daily injections and infusions he has to give him quality of life."

With Dylan's short life expectancy and full time care requirement, his parents turn to SWAN UK, a support group for the families of the country's 6,000 undiagnosed children which Mrs Myers represents in Essex.

She continued: "As far as we know he is the only one with his condition, but as a community you can bond with this other parents."

On Friday, April 27 the community will mark National Undiagnosed Children’s Day.

To find out more about Dylan and to help his family, go to www.treeofhope.org.uk/dylansstory or www.facebook.com/dylansstory/

For more about SWAN UK visit www.undiagnosed.org.uk or email Essex@undiagnosed.org.uk