New Milton hairdresser Amy Fletcher to undergo head shave to raise awareness of Loeys-Dietz syndrome which could have killed her fiancé

A HAIRDRESSER is to shave off her hair to raise awareness of a rare genetic condition that could have killed her fiancé and now casts a shadow over the life of their three-year-old daughter.

After being undiagnosed for ten years, Amy Fletcher’s partner Wayne Morgan was only found to have Loeys-Dietz syndrome after suffering a life-threatening emergency last year.

An echocardiogram revealed he had a “massive” aortic aneurysm - a bulge in the main blood vessel running from the heart which could burst at any time.

He underwent two surgeries and was in hospital for six weeks. Tests then revealed that he had Loeys-Dietz, which causes changes in the heart, blood vessels, bones, joints, skin and internal organs.

Amy (35), who runs Hair Design in New Milton, said: “Wayne did not have one pain free day in the last ten years. He would have horrific headaches and flu-like flare ups.

“He also just felt very ill. He went back and forth to the doctors, but they were quite dismissive.

“Eventually they diagnosed him with fibromyalgia and he was referred to a pain management clinic, but that did very little for him.”

Amy, who has been with Wayne (37), a building site manager, since she was 19, said: “It was heartbreaking to see him suffering so much.

“I started looking up his symptoms online to see if I could help him and I came across Marfan syndrome, which is very closely related to Loeys-Dietz.

“If you have it you should have a regular echocardiogram as it can badly affect your heart, but when Wayne asked his doctor for one, he was virtually laughed out of the surgery.”

In desperation, Amy and Wayne, who live in New Milton, paid for a private test, which he had in April last year. It showed that Wayne had an aortic aneurysm.

Amy said: “He was rushed into hospital for surgery. We were lucky as an aneurysm is a ticking time bomb that can kill you at any time.

“Further tests showed that Wayne had Loeys-Dietz. It was a relief to finally find out what he had but we were angry that it had taken so long.”

As the condition is a genetic one, Amy and Wayne’s children had to undergo tests to see if they also had it. Sadly, the couples’ daughter Mahri was found to.

Amy said: “At least she will grow up ‘safe’ as she will be monitored and tested regularly. Apart from fundraising, one vital part of the head shave is to raise awareness of Loeys-Dietz - even now we have medical staff saying, ‘Oh I’ve never heard of that’.

“Early diagnosis is vital with Loeys-Dietz. I am hoping our story will make more people aware, and when people have symptoms like Wayne did they will test for it.”

Amy is hoping to raise £10,000 from the head shave, which is on 1st June. Any money raised will be split between The Marfan Trust, Heartbeat House, Friends of PICU, and a small medical fund for Wayne & Mahri.

To donate, visit https://gofund.me/24185ba1

For more information about Loeys-Dietz, visit: https://marfan.org/conditions/loeys-dietz/