Soham woman speaks out about rare Marfan Syndrome which took the life of son Kieran Doggett

A Soham woman has spoken publicly for the first time about the rare condition which took the life of her 14-year-old son.

Next month Amy Milburn would have been celebrating with her son Kieran Doggett on his eighteenth birthday but instead she will be remembering, as she does every day, the son she lost suddenly to a syndrome she had not even heard of.

Back in August of 2019, Amy and her husband Jonathan, along with Kieran and his 16-year-old sister Charlotte, were enjoying life as owners of the Maids Head pub in Wicken, which was also their home.

“On that evening, Kieran was in his room and I went up to see what he wanted for his tea and found him dead on his bed,” said Amy. “I had been a first responder so I knew straight away that he had gone and there was nothing I could do.

“People have told me that my scream was worse than anything in a horror movie, although I can’t remember it myself.”

What followed was a nightmare.

“We had ambulances and police cars everywhere and initially me and my husband were suspects in an unexplained death. For two days and nights we had the police here and, after Kieran was taken away, they put a padlock on his door.

“I don’t think they really believed we had done anything, but they had to follow procedures and it wasn’t until the coroner’s report came back about a week later and we heard of Marfan Syndrome for the first time that there was a definite medical reason why he had died."

Marfan, as Amy was to learn, is a rare disorder affecting the connective tissues which support the organs and other structures in the body.

It can be life-threatening if it affects the heart and it was a leaking valve which proved to be the cause of Kieran’s death.

It is usually an inherited condition, but some, including Kieran, are the first in their family to have it.

“The symptoms of Marfan, described Kieran almost exactly,” said Amy. “People are tall and skinny, with flat feet, needing glasses and braces on their teeth and can develop curvature of the spine. Kieran was six foot three at fourteen and had an appointment coming up to check out his spine. The only thing he didn’t have was the flat feet,” she said.

Although some treatment can be effective, there is no cure for Marfan Syndrome and, said Amy, she was glad she had never known that Kieran had it.

“He was a normal fourteen-year-old boy who was crazy about his X-box and Marvel superheroes and he had fourteen years of happiness. If I had known, he would have missed out on hundreds of roller coaster rides because I would have wrapped him up in cotton wool.

“He died peacefully, with no sign of distress, in his bed with his headphones on watching one of his favourite series and that is what I try to hold on to”.