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Ryan's Story

Ryan's Story

When teenager Ryan went to have his eyebrow pierced, he joked: “I might bleed a bit more than usual, I’m on iron tablets”.

Those who didn’t know him would not have realised was that he lived with a rare life limiting medical condition which finally claimed his life at the age of 17 in October 2009.

Ryan had vascular EDS, which resulted in his joints regularly becoming dislocated, his skin covered in bruises and spontaneous bleeding. His parents Debbie and Rob, paid tribute to their “heroic” son who bravely hid his condition from most people with only family members and close friends aware of it.

When Ryan was born doctors told the couple that there was a 50/50 chance he would have EDS as mum Debbie also has the rare condition. When test results came through Debbie says she “already knew” that Ryan had the condition because he bruised as she changed his nappy.

"He was in such pain every day of his life but he didn’t show it

Growing up the brave youngster was unable to take part in contact sports such as rugby or football, but actively pursued other sports such as swimming and golf, winning a junior golf tournament aged just nine. Rob shows a picture of Ryan as a youngster in which his legs are a mass of bruises.
  
Rob, a former Marine, said: “Ryan lived as normal a life as possible. He was in such pain every day of his life but he didn’t show it. He still put other people before himself.
 
“We didn’t wrap Ryan in cotton wool. We informed him as he grew up in a way that wouldn’t terrify him. He protected us by being a normal young lad and protected other people by not giving too much information, so he wouldn’t scare them.”

Even the slightest bump or knock would see Ryan ending up at hospital and he became a familiar face to staff at Poole A&E. Debbie recalled Ryan offering his seat to an elderly woman on the bus although “he was more disabled than her”. Ryan gained a new independence after he got a Motability vehicle aged 16.

EDS sufferers can look as if they have nothing the matter with them, leading many people to assume that Ryan exaggerated his illness, say the couple. Debbie said: “One of the biggest problems myself and Ryan had was going out to shops using the blue disabled badge and people assume you’re fine. There was a lot of support from his teachers.”

Although Ryan “knew the future was bleak” he never gave up, achieving a clutch of GCSEs and passing maths a year early. Ryan had a brush with death just over a year ago when he fell over at Poole bus station, rupturing his spleen, but had fought his way back to health.

“I think he survived that for a reason. It gave him time to finish his growing up,” said Rob. Ryan was at his girlfriend’s house when Rob and Debbie got a call to say that he had collapsed.

Ryan was rushed to hospital with internal bleeding and the couple were with him at his bedside as he passed away.
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