Appeal to help Luke Quin after Ehlers-Danlos syndrome diagnosis

A BRAVE teenager with a rare debilitating genetic disorder which has left him wheelchair bound needs help from the public to regain his independence.

The family, friends and neighbours of Luke Quin, 17, are raising money to help fund an accessible downstairs bedroom and wetroom for him at his home in Marks Tey.

Just over two-years-ago, the teenager’s life was completely turned upside down when he became seriously ill with a mystery condition.

Mum Kay Quin said: “He came home from a school trip and was complaining about backache.

“At first we put it down to the different bed he had been sleeping in on the trip.

“One day he went to jump on his bed and suddenly ruptured his aorta. He lost all feeling in his legs.”

Luke was rushed to hospital where it was discovered he had suffered a serious injury to his spinal chord. He suffered renal failure and the muscles in his lower legs died and had to be removed.

He spent three-weeks in intensive care before suffering another burst in the aortic arch for which he needed more urgent surgery.

Aged 15 at the time, he was transferred to Evelina Children’s Hospital in London where he underwent another life-saving operation.

It wasn’t until he entered rehab after the operation doctors were able to diagnose Luke with Vascular Ehlers-Danlos syndrome, a condition which affects the body’s connective tissue which provides support in things like the skin, tendons, blood vessels, internal organs and bones.

Mrs Quin said: “It is an extremely rare condition which means he has no collagen in his body.

“He cannot lift heavy things because something could rip at any time.

“He cannot get knocked or if he has a fall he would have to go to hospital to check if everything was still ok.”

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