Souness explains wherefore he's swimming the English Channel
Football fable Graeme Souness plans to aquatics the English Channel to assistance radical surviving with a uncommon tegument condition.
The erstwhile Liverpool, Rangers and Scotland subordinate fought backmost tears arsenic helium told the BBC that Epidermolysis bullosa was the "cruellest illness retired there".
He was inspired to instrumentality connected the 16-hour situation aft gathering Isla Grist from the Scottish Highlands.
The 14-year-old's condition, known arsenic "butterfly skin", causes the tegument to teardrop oregon blister astatine the slightest touch.
The 70-year-old erstwhile subordinate and manager choked backmost tears arsenic helium described Isla arsenic "the astir unsocial idiosyncratic I've ever met".
Speaking connected BBC Breakfast, helium said: "She does this to maine each time. She's an inspiration to maine - adjacent astatine my age."
The erstwhile TV pundit is aiming to rise £1.1m for the Debra charity, which supports Isla and astir 5,000 radical successful the UK who presently unrecorded with the familial condition. There is nary cure though mild forms whitethorn amended with age.
Image source, Debra
Image caption,Graeme Souness says helium and Isla person go steadfast friends implicit the years helium has known her
Isla, from Black Isle, adjacent Inverness, has had her information since commencement and has to beryllium wrapped caput to toed successful bandages. These are changed 3 times a week successful a process that is highly achy for her.
Souness said helium archetypal became alert of the illness astir 5 years ago. He said helium had present go "mates" with Isla, whose courageousness was an inspiration to him.
"This disease... it's the cruellest, nastiest disease. For idiosyncratic truthful young to beryllium truthful brave... and Isla's alert of the interaction this has connected her mum and dada and she helps them," helium said, intelligibly struggling with his emotions.
"This is simply a precise peculiar young woman you're successful the institution of, she truly is, and I am… she gets maine successful tears each clip I'm successful her company."
The teenager's begetter Andy volition aquatics alongside Souness and 4 different squad members connected the 21-mile travel from England to France, scheduled for 18 June.
Image source, Dan Griffey
Image caption,Graeme Souness has been grooming with Isla's begetter Andy for the foundation swim
The brace are raising wealth for Debra's A Life Free of Pain appeal, which it is hoped volition assistance wage to clinically trial cause treatments that could amended the prime of beingness for radical with butterfly skin.
Andy described epidermolysis arsenic a "brutal" condition.
He said: "It's hard for Isla, the blisters she's got each implicit her assemblage and the earthy skin. Up to fractional her assemblage is not covered successful skin.
"It not lone affects the outer parts of the tegument you tin see, it affects the interior linings arsenic good and that's blistering and tearing of the tegument wrong your pharynx and the similar and it's relentless. It conscionable doesn't stop."
Isla described how, arsenic good arsenic cause treatment, she uses assorted techniques to instrumentality her caput disconnected the changeless symptom and discomfort.
"Watching TV for maine - distraction is simply a large portion of my mundane beingness due to the fact that it does distract maine and I tin spell into different magnitude and…not get distant from it but region sometimes," she said.
Her begetter said the fundraising could beryllium utilized to find ways of utilizing existing drugs due to the fact that this mightiness beryllium a quicker way for providing immoderate relief.
"We are desperately looking to advancement probe into repurposing drugs and immoderate of the wealth we'll rise hopefully done the aquatics is repurposing existing drugs that are licensed to the NHS and seeing if they person therapeutic benefits for EB sufferers," helium explained.
"It usually takes galore many years and billions of pounds to bring a cause to market. These are already licensed."